Friday, July 31, 2009

NO I.V. Fluids in 2 full days

Thank you everyone for all the prayer and support... You help us stay strong... KK also pray for all of you every night.
Mikayla is not fond of tubes, IV fluid. When she goes to the play room she wants her arms free from any tubes. So she figured out that if she drinks plenty of liquid during the day and until she goes to bed she does not need to hooked on her machine. So she drinks 12 oz juice(apple and orange), 24oz water, 8-9 oz chocolate milk and 1 ice cream by the time she goes to bed. And by the way, she gives her own oral meds, helps nurse flush her IV meds, and takes her temp. She made a funny remark about nurses. She thought nurses are only girls. Because she had Ryan (RN) for 2days and she gave him high five
Let me tell you , she drinks and eats a lot. It is amazing!!!
Thank you for Praying..... Love you all and God Bless!!!!!!

Wednesday, July 29, 2009

Make-A-Wish and Home Break Approaching

Today believe it or not has led to some new developments. First, The Jonas Brothers were approached about visiting Mikayla from a friend of ours. They said that we had to contact Make-A-Wish and the KC Chamber of Commerce. Before we contacted them we asked Mikayla if she wanted to meet them and she said no. She prefers to go meet the entire cast of Hannah Montana. Since that is what she wants we contacted Make-A-Wish and have begun the quest to fulfill her desire to meet Miss Miley Cyrus. Also the pathologist is reviewing her blood counts and immune system to make a determination as to how far she has come. They assume we be able to go home for a small break sometime next week. We will find out sometime tommorow. Before we make it home we have to set an appointment for a wig makeover session at St. Luke's. Also we have to take her to the mall to buy candy.

Tuesday, July 28, 2009

One battle partially won 3 more to go

Here is what's ahead for Mikayla. Looking through her pictures and videos she may seem great, but she has a long road of battles ahead. Two rounds of Consolidation (Post-remission) Therapy. A high-dose consolidation chemotherapy differs from induction therapy in that usually only cytarabine (ara-C) is used. The drug is given at very high doses, typically over 5 days. This process is repeated once or twice. When examined four years after this treatment, about 40% of young patients (younger than 60 years) will not show any signs of leukemia. In older adults, this number is around 15%. This will last from mid August through Mid October. Next is BMT which should begin around the first of November. BMT is our biggest risk.

What is a bone marrow transplantation?

Bone marrow transplantation (BMT) is a special therapy for patients with cancer or other diseases which affect the bone marrow. A bone marrow transplant involves taking cells that are normally found in the bone marrow (stem cells), filtering those cells, and giving them back either to the patient they were taken from or to another person. The goal of BMT is to transfuse healthy bone marrow cells into a person after their own unhealthy bone marrow has been eliminated.

Anatomy of a bone, showing blood cells used in pediatric bone marrow transplants.
Anatomy of a bone, showing blood cells used in pediatric bone marrow transplants.
Click Image to Enlarge

What is bone marrow?

The bone marrow is a soft, spongy tissue found inside the bones. The bone marrow in the hips, breast bone, spine, ribs, and skull contain cells that produce the body's blood cells. The bone marrow is responsible for the development and storage of about 95 percent of the body's blood cells. The three main types of blood cells produced in the bone marrow include:
  • red blood cells (erythrocytes) - carry oxygen to the tissues in the body.

  • white blood cells (leukocytes) - help fight infections and to aid in the immune system.

  • platelets - help with blood clotting.
Each of these cells carries a life-maintaining function. The bone marrow is a vital part of the human body.

What are stem cells?

Every type of blood cell in the bone marrow begins as a stem cell. Stem cells are immature cells that are able to produce other blood cells that mature and function as needed.

Stem cells are the most important cells needed in a bone marrow transplant. Stem cells, when transplanted, find their way to the recipient's marrow and begin to differentiate and produce all types of blood cells that are needed by the body.

Why is a bone marrow transplant needed?

The goal of a bone marrow transplant is to cure many diseases and types of cancer. When a child's bone marrow has been damaged or destroyed due to a disease or intense treatments of radiation or chemotherapy for cancer, a bone marrow transplant may be needed.

A bone marrow transplant can be used to:
  • replace diseased, non-functioning bone marrow with healthy functioning bone marrow (for conditions such as leukemia, aplastic anemia, and sickle cell anemia).

  • replace the bone marrow and restore its normal function after high doses of chemotherapy or radiation are given to treat a malignancy. This process is often called "rescue" (for diseases such as lymphoma, neuroblastoma, and breast cancer).

  • replace bone marrow with genetically healthy functioning bone marrow to prevent further damage from a genetic disease process (such as Hurler's syndrome, and adrenoleukodystrophy disorder).
Pediatric bone marrow transplantation has risks involved, some of which are life threatening. The risks and benefits must be weighed in a thorough discussion with the pediatric bone marrow transplant team prior to the procedure.

Each child experiences diseases differently and a pediatric bone marrow transplantation may not be appropriate for everyone who suffers from these diseases. Some of the diseases that have been treated with bone marrow transplant include the following:
  • leukemia

  • lymphomas

  • some solid tumors (i.e., neuroblastoma, rhabdomyosarcoma, brain tumors)

  • aplastic anemia

  • immune deficiencies (severe combined immunodeficiency disorder, Wiskott-Aldrich syndrome)

  • sickle cell disease

  • thalassemia

  • Blackfan-Diamond anemia

  • metabolic/storage diseases (i.e., Hurler's syndrome, adrenoleukodystrophy disorder)

  • cancers of the breast, ovaries, and kidneys

What are the different types of bone marrow transplants?

There are different types of bone marrow transplants depending on who the donor is. The different types of bone marrow transplant include the following:
  • autologous bone marrow transplant
    The donor is the child him/herself. Stem cells are taken from the child either by bone marrow harvest or apheresis (peripheral blood stem cells) and then given back to the child after intensive treatment. Often the term "rescue" is used instead of "transplant."

  • allogeneic bone marrow transplant
    The donor shares the same genetic type as the child. Stem cells are taken either by bone marrow harvest or apheresis (peripheral blood stem cells) from a genetically-matched donor, usually a brother or sister. Other donors for allogeneic bone marrow transplants include:

    • a parent - a haploid-identical match is when the donor is a parent and the genetic match is at least half identical to the recipient.

    • an identical twin - a syngeneic transplant is an allogeneic transplant from an identical twin. Identical twins are considered a complete genetic match for a marrow transplant.

    • unrelated bone marrow transplants (UBMT or MUD for matched unrelated donor) - the genetically matched marrow or stem cells are from an unrelated donor. Unrelated donors are found through the national bone marrow registries.

  • umbilical cord blood transplant
    Stem cells are taken from an umbilical cord immediately after delivery of an infant. These stem cells reproduce into mature, functioning blood cells quicker and more effectively than do stem cells taken from the bone marrow of another child or adult. The stem cells are tested, typed, counted, and frozen until they are ready to be transplanted.
    Because the stem cells are "new," they are able to produce more blood cells from each stem cell. Another advantage cord blood has is that the T-lymphocytes (part of the immune system that causes graft-versus-host disease) are not completely functional this early in the stage of life. Recipients of cord blood transplants have a decrease risk for severe graft-versus-host disease.

The pediatric bone marrow transplant team:

The group of specialists involved in the care of children who are undergoing a transplant procedure is often referred to as the "transplant team." Each individual works together to provide the best chance for a successful transplant. The bone marrow transplant team consists of:
  • physicians - physicians who specialize in oncology, hematology, immunology, and bone marrow transplantation.

  • transplant nurse coordinator - a nurse who organizes all aspects of care provided to your child before and after the transplant. The nurse coordinator will provide patient education and coordinate the diagnostic testing and follow-up care.

  • social workers - professionals who will provide support to your family and help your family deal with many issues that may arise including lodging and transportation, finances, and legal issues. They can also help coordinate alternative means for school, so that your child does not get behind.

  • dietitians - professionals who will help your child meet his/her nutritional needs before and after the transplant. They will work closely with you and your family.

  • physical therapists - professionals who will help your child become strong and independent with movement and endurance after the transplantation.

  • pastoral care - chaplains who provide spiritual care and support.

  • other team members - several other team members will evaluate your child before transplantation and will provide follow-up care, as needed. These include, but are not limited to, the following:

    • pharmacists
    • respiratory therapists
    • lab technicians
    • infectious disease specialists
    • dermatologists
    • gastroenterologists
    • psychologists
    • child life specialists
An extensive evaluation is completed by the pediatric bone marrow transplant team. The decision for your child to undergo a bone marrow transplant will be based on many factors including:
  • your child's age, overall health, and medical history
  • extent of the disease
  • availability of a donor
  • your child's tolerance for specific medications, procedures, or therapies
  • expectations for the course of the disease
  • expectations for the course of the transplant
  • your opinion or preference

Preparation for the recipient:

For the child receiving the transplant, the following will occur in advance of the procedure:
  • Prior to the transplant, an extensive evaluation is completed by the pediatric bone marrow transplant team. All other treatment options are discussed and evaluated for risk-versus-benefit.

  • A complete medical history and physical examination are performed, including multiple tests to evaluate the child's blood and organ functions (i.e., heart, kidney, liver, lungs).

  • A child will often come into the transplant center up to 10 days prior to transplant for hydration, evaluation, placement of the central venous line, and other preparations. A catheter, also called a central venous line, is surgically placed in a vein in the chest area. Blood products and medications will be administered through the catheter.

  • A suitable (tissue typed and matched) donor must be available. Finding a matching donor can be a challenging and lengthy process. Voluntary marrow donors are registered in several national and international registries. A bone marrow search involves searching these registries for donors whose blood most closely resembles or matches the child needing the transplant.

Preparation for the donor:

  • Donor sources available include: self, sibling, parent or relative, non-related person, or umbilical cord blood from a related or non-related person. There are national and international registries for non-related persons and cord blood. For family members, they may be typed because of the desire to help. These relatives may or may not elect to have their type registered for use with other recipients.

  • If the potential donor is notified that they may be a match for a child needing a transplant, they will undergo additional tests. Tests related to their health, exposure to viruses, and complete genetic analysis will be done to determine the extent of the match. The donor will be given instructions on how a bone marrow donation will be made.

  • Once a match for a child needing a bone marrow transplant is found, then stem cells will be collected either by a bone marrow harvest (collection of stem cells with a needle placed into the soft center of the bone marrow) or peripheral blood stem cell collection (stem cells are collected from the circulating cells in the blood). Cord blood has already been collected at the time of a birth and stored for later use.

How are a donor and recipient matched?

Matching involves typing human leukocyte antigen (HLA) tissue. The antigens on the surface of these special white blood cells determine the genetic make-up of a person's immune system. There are at least 100 HLA antigens, however, it is believed that there are a few major antigens that determine whether a donor and recipient match. The others are considered "minor" and their effect on a successful transplant is not as well defined.

Medical research is still investigating the role all antigens play in the process of a bone marrow transplant. The more antigens that match, the better the engraftment of donated marrow. Engraftment of the stem cells occurs when the donated cells make their way to the marrow and begin reproducing new blood cells.

How are the stem cells collected?

A bone marrow transplant is done by transferring stem cells from one person to another. Stem cells can either be collected from the circulating cells in the blood (the peripheral system) or from the bone marrow.
  • peripheral blood stem cells (PBSCs)
    Peripheral blood stem cells (PBSCs) are collected by an apheresis, a process in which the donor is connected to a special cell separation machine via a needle inserted in the vein. Blood is taken from one vein and is circulated though the machine which removes the stem cells and returns the remaining blood and plasma back to the donor through another needle inserted into the opposite arm. Several sessions may be required to collect enough stem cells to assure a chance of successful engraftment in the recipient.
    A medication may be given to the donor for about one week prior to apheresis that will stimulate the bone marrow to increase production of new stem cells. These new stem cells will be released from the marrow and into the circulating or peripheral blood system.

  • bone marrow harvest
    Bone marrow harvesting involves collecting stem cells with a needle placed into the soft center of the bone, the marrow. Most sites used for bone marrow harvesting are located in the hip bones and the sternum. The procedure takes place in the operating room. The donor will be anesthetized during the harvest and will not feel the needle. In recovery, the donor may experience some pain in the areas where the needle was inserted.
If the donor is the child him/herself it is called an autologous bone marrow transplant. If an autologous transplant is planned, previously collected stem cells, from either peripheral (apheresis) or harvest, are counted, screened, and ready to infuse.

For umbilical cord blood transplants, blood has been collected at the time of a birth and stored. Cord blood is collected after delivery, when the placenta and umbilical cord are separated from the infant. The site of collection is cleaned to prevent bacteria from entering the collection process. The blood that is contained in the cord is collected in a sterile container. The blood is then tested for type and the presence of viruses or disease, and the stem cells are counted. The cord blood is then stored in special freezers and is registered in a national registry for potential recipient matches.

The bone marrow transplant procedure:

The preparations for a bone marrow transplant in a child vary depending on the type of transplant, the disease requiring transplant, and your child's tolerance for certain medications. Consider the following:
  • Most often, high doses of chemotherapy and/or radiation are included in the preparations. This intense therapy is required to effectively treat the malignancy and make room in the bone marrow for the new cells to grow. This therapy is often called ablative, or myeloablative, because of the effect on the bone marrow. The bone marrow produces 95 percent of the blood cells in our body. Ablative therapy prevents this process of cell production and the marrow becomes empty. An empty marrow is needed to make room for the new stem cells to grow and establish a new production system.

  • After the chemotherapy and/or radiation is administered, the marrow transplant, either from bone marrow, cord, or from peripherally collected stem cells, is given through the central venous catheter into the bloodstream. It is not a surgical procedure to place the marrow into the bone, but is similar to receiving a blood transfusion. The stem cells find their way into the bone marrow and begin reproducing and establishing new, healthy blood cells.

  • Supportive care is given to prevent and treat infections, side effects of treatments, and complications. This includes frequent blood tests, close monitoring of vital signs, strict measurement of input and output, weighing your child daily (or twice daily), and providing a protected and sterile environment.
The days before transplant are counted as minus days. The day of transplant is considered day 0. Engraftment and recovery following the transplant are counted as plus days. For example, a child may enter the hospital on day -8 for preparative regimen. Days +1, +2, etc., will follow. There are specific events, complications, and risks associated with each day before, during, and after transplant. The days are numbered to help the child and family understand where they are in terms of risks and discharge planning.

During infusion of bone marrow, your child may experience any, or all, of the following symptoms:
  • pain
  • chills
  • fever
  • hives
  • chest pain
After infusion, your child may:
  • spend several weeks in the hospital.

  • be very susceptible to infection.

  • experience excessive bleeding.

  • have blood transfusions.

  • be confined to a sterile environment.

  • take multiple antibiotics and other medications.

  • be given medication to prevent graft-versus-host disease (if the transplant was allogeneic). The transplanted new cells (the graft), tend to attack the child's tissues (the host), even though the donor is a relative, such as a brother, sister, or parent.

  • undergo continual laboratory testing.

  • experience nausea, vomiting, diarrhea, mouth sores, and extreme weakness.

  • experience temporary emotional or psychological distress.
Your child's physical and mental health are important in the success of a transplant. Every measure is taken to minimize complications and promote a healthy, happy, safe environment for your child.

When does engraftment occur?

Engraftment of the stem cells occurs when the donated cells make their way to the marrow and begin reproducing new blood cells.
Depending on the type of transplant and the disease being treated, engraftment usually occurs around day +15 or +30. Blood counts will be performed frequently during the days following transplant to evaluate initiation and progress of engraftment. Platelets are generally the last blood cell to recover.

Engraftment can be delayed because of infection, medications, low donated stem cell count, or graft failure. Although the new bone marrow may begin making cells in the first 30 days following transplant, it may take months, even years, for the entire immune system to fully recover.

What complications and side effects may occur following BMT?

The following are complications that may occur with a pediatric bone marrow transplantation. However, each child may experience symptoms differently. Complications may vary depending on the following:
  • type of marrow transplant
  • type of disease requiring transplant
  • preparative regimen
  • age and overall health of the recipient
  • variance of tissue matching between donor and recipient
  • presence of severe complications
Possible complications may include, but are not limited to, the following. These complications may also occur alone, or in combination:
  • infections
    Infections are likely in the child with severe bone marrow suppression. Bacterial infections are the most common. Viral and fungal infections can be life threatening. Any infection can cause an extended hospital stay, prevent or delay engraftment, and/or cause permanent organ damage. Antibiotics, anti-fungal medications, and anti-viral medications are often given to prevent serious infection in the immunosuppressed child.

    Preventative measures for common sources of infection are also a part of transplant. This may include any, or all, of the following:

    • specially-filtered rooms
    • diet restrictions
    • isolation requirements
    • restriction of visitors
    • strict hygiene regimen
    • frequent linen changes
Blood tests are performed to prevent, detect, and treat infections. Often, multiple antibiotics are started if an infection is suspected.
  • low platelets and low red blood cells
    Thrombocytopenia (low platelets) and anemia (low red blood cells), as a result of a non-functioning bone marrow, can be dangerous and even life threatening. Most children will require multiple blood product transfusions. Low platelets can cause dangerous bleeding in the lungs, gastrointestinal (GI) tract, and brain. Until the stem cells begin making new blood cells, GI tract therapy is needed to prevent injuries and to treat anemia.

  • pain
    Pain related to mouth sores and gastrointestinal (GI) irritation is common. High doses of chemotherapy and radiation can cause severe mucositis (inflammation of the mouth and GI tract). Without the normal immune system functioning, your child is unable to heal these irritations quickly. Often, pain medication is required. Mouth care is needed to prevent infection and injury when mucositis is suspected. Diarrhea, nausea, and vomiting may occur with chemotherapy, radiation, and/or GI irritation. Calories and proteins may be given through an intravenous (IV) line until your child is able to eat again and the diarrhea has resolved.

  • fluid overload
    Fluid overload is a complication that can lead to pneumonia, liver damage, and high blood pressure. The primary reason for fluid overload is because the kidneys cannot keep up with the large amount of fluid being given intravenously in the form of medications, nutrition, and blood products. The kidneys may also be damaged from disease, infection, chemotherapy, radiation, and/or antibiotics.

    During transplant and recovery, your child will be assessed for signs and symptoms of fluid overload. He/she may be weighed at least daily, often twice or three times daily, and blood chemistries and input and output will be measured frequently. Medications that help kidney function and elimination of excess fluid may be given.

  • respiratory distress
    Respiratory status is an important function that may be compromised during transplant. Infection, inflammation of the airway, fluid overload, graft-versus-host disease, and bleeding are all potential life-threatening complications that may occur in the lungs and pulmonary system.

    Close monitoring of your child's respiratory status may include:

    • chest x-rays - a diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.

    • pulse oximetry - an oximeter is a small machine that measures the amount of oxygen in the blood. To obtain this measurement, a small sensor that looks like a Band-Aid® is taped onto a finger or toe. When the machine is on, a small red light can be seen in the sensor. The sensor is painless and the red light does not get hot.

    • supplemental oxygen

  • organ damage
    The liver and heart are important organs that may be damaged during the transplantation process. Temporary or permanent damage to the liver and heart may be caused by infection, graft-versus-host disease, high doses of chemotherapy and radiation, or fluid overload.

    Close monitoring of your child's blood work and vital signs is important in minimizing and detecting any organ damage that has occurred.

  • graft failure
    Graft failure is a potential complication. Graft failure may occur as a result of infection, recurrent disease, or if the stem cell count of the donated marrow was insufficient to cause engraftment.

    Graft failure may be treated with an additional marrow transplant if a source is available.

  • graft-versus-host disease
    Graft-versus-host disease (GVHD) can be a serious and life-threatening complication of a bone marrow transplant. GVHD occurs when the donor's immune system reacts against the recipient's tissue. The new cells do not recognize the tissues and organs of the recipient's body. The most common sites for GVHD are the GI tract, liver, skin, and lungs.

    GVHD is graded from I to IV and can be acute (occurs suddenly) or chronic (occurs over a period of time). Your child will be monitored closely for signs and symptoms of GVHD. Diarrhea, fever, rash, skin changes, abdominal pain, respiratory complications, and decreased liver function may be present with GVHD.

    Medications will be given prior to transplant to reduce the risk of this complication.

When will my child be discharged?

When your child is discharged following a bone marrow transplant depends on many factors, including the following:
  • extent of engraftment

  • presence of complications

  • your child's overall health

  • distance from the facility (this may be specified by your child's team of physicians. Occasionally, a bone marrow transplant patient will be required to stay within a certain distance or travel time from the facility to ensure safety if complications arise.)
Frequent visits to your child's transplant team will be required to determine effectiveness of treatment, detect complications, detect recurrent disease, and to manage the late effects associated with a bone marrow transplant. The frequency and duration of visits will be determined by your child's transplant team.

Long-term outlook for a pediatric bone marrow transplantation:

Prognosis greatly depends on the following:
  • type of marrow transplant
  • type and extent of the disease being treated
  • disease response to treatment
  • genetics
  • age and overall health of the child
  • your child's tolerance of specific medications, procedures, or therapies
  • severity of complications
As with any procedure, such as bone marrow transplant, prognosis, and long-term survival can vary greatly from child to child. The amount of transplants occurring for an increased number of diseases and medical developments has greatly improved the outcome for bone marrow transplant in children and adults. Continuous follow-up care is essential for the child following a bone marrow transplant. New methods to improve treatment and to decrease complications and side effects of a bone marrow transplant are continually being discovered.

Monday, July 27, 2009

Note about fundraisers at the request of the organizers

"Skate for Mikayla" night at the Webb City Skateland on Tuesday July 28th from 6-8. Admission is $3 and all of the proceeds go to Mikayla's Fund.
-We will be having a BBQ and auction on August 30th with a live band, food and much more. I'll have more details as they become available. Tickets are $25. Auction items and volunteers are much needed and greatly appreciated!

If you are interested in donating, volunteering, purchasing a t-shirt, or anything else, please let MeMe qt Busy Bee Academy know.


At Mikaylas request we will no longer change the song. She wants Sponge Bob's song "The Best Day Ever". She is funny. She is waiting to talk to somebody in messenger, but messenger will not work on the hospitals security settings. Instead those who wish to talk to her need to download a program free of charge called OOVOO. Its easy to use. When searching for friends search mikaylasfight. Today she played and played. Now she is resting and says her legs are exhausted.

Been more active

Sorry have not been able to update. Mikayla and Malachi been keeping me busy. Mikayla is spending some time in the playroom and Malachi was cruising around 4th floor. Mikayla doing well. Still no fever for 48 hours. Still limping but moving around. Losing quite a bit of hair. Large bald spot in the back of her head. Did not want me to shave it all yet. But is wanting to get blonde hair. She still picks people to talk to. Red rashes from vancomyecin almost gone.
Mike had hard time breathing tonight.
Again thank you so much... thank you for cont. praying for us...God Bless.....

Saturday, July 25, 2009

No fever for 24 hours

We decided to eat at about 7pm and patiently waited for 8 o'clock in order to check her temperature so maybe we can go to playroom tonight. About 7:30 , she threw up all she ate and drank for this evening. At the same time, Malachi started crying. It was difficult because Mike already left and I was by myself with two kids crying. Made it... got her cleaned... Malachi still crying.. but made it. Grabbed the thermometer, and walla...37.7 ... good to go!!!! We were ready to go to playroom but nurse came togive her nausea medicine. Had to wait 30 min. Finally , we got to the playroom. She was ok to see other kids in the room. Thi (one of the dads there) asked her if she wants to color or draw. She decided she will draw a picture of herself. She played with 2 other kids. After drawing , she played with cash register then foam stickers and she was even letting people help her. Then she decided she will play mommy and take care of a baby doll. She was busy . Played in the kitchen and told me , "Iwill bake 3 different flavors of cake; chocolate, vanilla and strawberry".
She was a little shaky but was walking in the playroom. It was amazing. It was the most active I have seen her since July 6. Then the nurse came andtold her "its time for antibiotics". She did not want to leave she needed to. She played for 2.5 hours. Of course Malachi played that time as well in the playroom.
Mikayla was awesome... she was very determined to get it done...

Friday, July 24, 2009

She ate well...

Woke up late this am. Mikayla in good mood. She had 4 pcs of bacon , 2 french toast sticks, a bowl of strawberries, 1 cup apple juice . Ate really well. Dr. Manalang , Dr. Avery and another doctor were happy about how she looks this am. I was also told that blood work they did to test for fungal infection came back negative. Dr. Manalang gave Mikayla Little Mermaid book and she actually did not make face at her (LOL) . KK is painting right now and I play as the paint assisstant Hehe he. Yey!!!
According to Mike , Malachi was fine after they came back from Wal-Mart , fell asleep, woke up at 6am and no fever. Yey!!

Thursday, July 23, 2009

Malachi is the match...

Bone marrow transplant doctor was here briefly this pm to inform us that Malachi ,9 mo old is Mikayla 's match. We will meet next week with transplant coordinator for blood type and match details. We will discuss what will it do to the recepient and the donor. Then when it is getting close, the whole transplant team will meet again with us to discuss everything . What we were told initially was , after third course of chemo which will be around end of September or beginning of October , they will perform the transplant. Then upon transplant , Mikayla stays 100 more days in hospital depending on how her body is doing. Then in and out for check up and follow up treatments. We were also told that there will be no more chemo after transplant. So we are looking at possibly late winter, early spring before we are out of the hospital. Hopefully!!!!
Right now, 11:40 pm , Mike and the three kids are at Wal-Mart getting medicine for Malachi. He has been running high temp since last night and were guessing he isjust teething. Mike has been checking his temp every 6 hours and giving tylenol to keep it down. He cannot be around Mikayla, so he was kicked out of the room since last night. He has to be fever free for 24 hours .
Been a rough 24 hours so far but in God's grace we will make it.
Again thank you for all your prayers and support.

I miss my so bad

Mikayla does not need to try to make people laugh because it is so natural for her to do so. Things she says can be so serious but so funny. She makes you laugh when she moves, she sings, she dances and when she is just acting goofy. It hurts to see her in bed, when she cries , when she has hard time getting up, when she cant move her arm . I know I see her but I dont see her... crazy but true. I miss her so much..... I am not giving up and will never give up. I know that God is working on our side. I am blessed to have all my family and friends helping us through this journey. I want to tell everyone thank you so so much for everything .
I love you so much

Wednesday, July 22, 2009

Good News

Sorry for the delay. I left for Joplin this morning to get our older kids from our friends not expecting much to happen. We have great news. Malachi is a match for Mikayla's bone marrow transplant she needs. Nothing is final yet and as we have learned so many times before information and news changes fast here. The transplant team will come speak with us tomorrow with a bit more detail. We plan to ask many questions about the risk to Malachi. If it is too great a risk we will request that they go to the National Donor List. I would prefer it comes from family as the triggers are more match than from anywhere else. I just can't have two children risking their lives at the same time. From what I hear the donor is only uncomfortable for a short time. Like I said we will see. Great news though none the less. After taking a beating for weeks from God, I think he is letting up and maybe our test is nearing its end. Mikayla has done well today. She showed me how much hair she has lost on her pillow and seems to have enjoyed her day.

Tuesday, July 21, 2009

What its like for Mikayla

Trying to explain what is happening to her has been a challenge. She wants to know why. Why she had to be the one to get sick. I have told her she has cancer. She understands something is in her blood and the doctors here are taking her blood out and putting new blood in. That is the best way I could think of how to explain her problem. She understands about her hair lose as well. Some kids have offered to talk to her, but because they are bald she doesn't want to have to see what she will look like. She is pretty brave. As far as being scared Mikayla doesn't appear like she is. She gets depressed sometimes because nobody is here to play with her. She whines when nurses come in and disturb her rest. She seems to still be pretty independent as well. She wants to do most things by herself. She has become totally infatuated with a Child Life worker here named Kelly. Kelly brings stuff for Mikayla to do in the room. Everything from sand art to door hangers. She is starting to get more of a natural sleep pattern. She talks a lot about what she plans to do when we leave. She first wants to go to the mall and buy a ton of candy at the candy store there. She wants to go swimming. We have not told her she can't yet, but rather we tell her we do what we can. She walks around with assistance because she seems to lack the balance if she makes turns or bends. Disney Channel. She watches Disney 8 or more hours a day. We have seen some shows more than 5 times since we have been here. Little things make her mad easily. She just wants things her way and most of the time even if it is as simple as moving her pillow she tends to cry first then ask us for help after. Her right side acts as if she has had a stroke. Her arm gives her a terrible time. She can bend it at the elbow, but cant make it go up. She instead has to move her torso to position it. X-ray and MRI have come back negative. We don't understand yet what is happening. I hope it gets better so the only hurdle in her life is happening now and the rest will be smooth sailing. The doctors all say she has spunk. I call it like I see it spoiled rotten. She honestly has more fight in her and understanding then you would think a 5 year old could muster. We do our best to be sure she gets anything she wants. Feet rub, pillow fluff, ice cream, etc. Life is not the best for her right now, but she seems to have found a way to be complacent.

Play room

Today she was finally cleared to go to the playroom. She painted for about 3 hours.


It's 3:21am as I begin writing this. Mikayla is sound asleep. She feel to sleep around 10pm. Nurses have checked her several times and her temp is still down. That is a wonderful sign. It shows that most likely the ARI C (chemo drug) was causing her temp to increase. She is still loosing weight, but on a much smaller scope. Within a few days she should be steadily rising. Her hair lose has slowed a bit. She continues to get this awful sandpaper red rash when she gets her antibiotics, but it is a pretty common side effect. Much of the next few days should be uneventful. A lot of eating and sleeping is all we can expect to see. We will hang here until her immune system is around 100 or so. Its a complicated math problem to figure it out and my brain is still jacked on coffee, but I think we are still around the zero mark.

Monday, July 20, 2009

Goal met goal lost

Mikayla has gone 24 hours without a temp! Finally after 2weeks of fevers she crosses the obsticle to be able to get out of the room and they say she can't. Mikayla is in isolation now. We don't have a time frame to look forward to. Isolation can last 1 day or it can last 30. We have to wait for her immune system to start functioning first. I guess that is what cancer is all about. It continues to keep you hoping for something else. No matter. We always step back take a breath and add another goal to the list. Mikayla's outside appearance is fantastic. Her actions and reactions are money. She is so funny at times. Today the nurse came to take her temp and from the lack of anything else to do Mikayla says "I want to take my temp I know how to do it." Ok? I guess from just hanging out and getting her temp taken 20 to 30 times a day she has caught on to how the machine functions. The nurse let her do it and she done it correct. She put the cover on the probe, turned on the deal, put it under her arm, and waited. When it said 38.2 she says good no fever. She knows at 38.5 she is considered to have a temp at that time. Before I started to write an update just now she says "Daddy remember you are supposed to read me a story so I can fall asleep!" It was quiet in here for like 25 minutes and that just popped out of the blue. She is full of one liners. Inside I know there is still problems, but she has come a long way. Today Rea and I took time to go through what people have done and what people are doing to help us. It is remarkable. We are so grateful to everyone. On a personal note this blog is somewhat of a way for us to let others know how we feel. Most of the things here are strickly Mikayla, but I would love to hug everyone out there and say thank you. I am not a very personable or religious kind of guy, but life has a way of making guys flaky. Our friends, family, and community could not be any greater. The love, support, and prayers from all of you are taken with a smile and feeling of gratefulness. Also if there is any chance my English 1 teacher is reading this, "I am sorry, but maybe I need to take it over again for the 5th time, lol"

Feeling Good

Tests come back on the CT scan. No major problems or fungus. She has some thickening of her colon that can be associated with many things even her meds. No fever since last midnight. Currently she is watching Marley and Me after we read a book.


Getting ready to go get a full body CT scan. Doctors are checking to see if she has any "fungus" growing in her. The reason being because she continues to have fevers. The cultures are coming up negative for infection so they need to determine if the fevers are caused by ARI C or if they are caused by "fungus". If she has a fungal type infection it is easily controlable with different meds. Doctors explained that the cause of this type of infection is from bringing the body's immune system to 0. With nothing to fight it a fungal infection is extremely easy to catch even from microscopic particulate in the air.
Today went well. She is doing much better. Playing and being creative. She is dealing with rashes due to the antibiotic still, but all and all she is a trooper. Her voice has turned into this squeky tiny mouse type. Its kind of fun to chat with her. She starts saying "remember daddy...." and continues about stuff like "you know you have to have gloves" and silly stuff like that.

Saturday, July 18, 2009

Spoke to the Dr. about the chemo mistake and they assured us that today is her last dose. She is loosing weight and we have been told that if she does not start eating better we have to do a feeding tube. For breakfast she ate half a pancake 2 bacon and some milk. Very good for her and we will try to push lunch as well. Today her hair has started coming out. Not a lot, but it is starting to come out everytime we brush it. Later today we will try to convince her that she needs a hair cut so that the shock of loosing it will be minimized. Thanks and keep praying.

Friday, July 17, 2009

What the hell!

Tonight at around 10 the nurse came in to give Mikayla a dose of Chemo. I was like what's that. She said it was a push chemo. I told her we had already been told she had her last dose. The nurse looked confused and left the room for a few moments. She came back with another nurse. They said that she was due for a dose. I said you had better double check because she has had her last one already. They went back and said she had only 19 of 20. I said how do you figure? Mikayla is supposed to finish with a morning dose not a night dose. They said they reviewed the file and she had 19 so this would be the last. Every time a nurse has came in with chemo I have asked when the last dose will be all of them have said Saturday morning. Well being locked up in that prison you tend to loose track of days easily. Still in my head it was Saturday and the morning nurse had already told me it was her last dose that morning. The nurses talked me down and tried to make me understand. They swore that it was the last dose. They assured me she had 19 only and that this is her 20th. I let them inject her because even though it is chemo it is not as mean as the other chemo drugs. I was not happy about it. I bugged and bugged me. I sent Rea to fetch the Dr. I had to get someone I could trust to tell me that I had just not made a mistake by letting those dumbasses inject my daughter with poison she did not need. Rea seen the charts. While looking at them with my wife the nurses seen a mistake and quickly scratched it out. Mikayla was just injected with number 19 of 20 not 20 or 21. I was wrong because the day is Friday and the last is to be on Saturday morning. The nurses were way wrong and could have injected her with the wrong chemicals. That is bull crap! We have time with the Dr. in the morning and hopefully the Dr. cracks some ass after he finds out.

Feeling way better. Today no fever and if when she wakes and still no fever she gets to go to the play room. Her hair is slowly coming out now. She knows what to expect, but does not want to get it cut first. She wants a blonde wig. LOL. Today we gave her a shower for the first time in about a week. We have noticed she has lost a lot of weight. We concentrated on eating well today and she done great. We are giving her as many things with high calories as she will eat, but mainly junk food (fries, nuggets, etc.) Her balance is still not there and she favors her right side much the same as a stroke patient does. Thats it for today. You can tell from her picture that she is doing well.


Just chillaxing taking a nap. No drama today. So far her mood has been good. Her fever has been in check.


I spoke with the doctor about 20 minutes ago. I asked how do we know if she has achieved remission. She went to through the plan with me and on the 28th day here (around Aug 3 or so) we do another bone marrow aspirate. As of yesterday her leukemia blasts (? cells from what I understand) are currently at 7%. She said that she is coming along perfectly. She is currently on her last chemo of her induction phase (first month of chemo). We stay here for 20 more days to monitor blood lose and infections.

Through the night

The night was uneventful. She slept really well and her vitals are excellent. Today we will try to walk more and check with the doctors on her remission progress

I struggle trying to keep people up to date and I am slowing realizing that if I pick certain people to update within a group it is easier. I don't know how much you know. I see a lot of people saying things that are mostly true, but somewhat misunderstood. I will try my best to kind of bring you up to date on where we are. On July 4 about 10pm Mikayla complained her back hurt. We went to the ER around midnight to get it looked at. At the time the claimed it was a UTI. Later when reviewed they were incorrect. Sunday she slept all day, but was no longer in pain. We thought nothing of it, because she was up until 5am at the ER. Monday was more of the same. She was kind of warm, but overall she seemed fine. I left for Joplin mid morning to pay property taxes and to renew the plates. During that time she still had trouble staying awake. When we arrived home I carried her inside and took her shoes off. Her feet were bruised, but they were not the night before. I removed all her clothes and only seen a few very very small bruises that looked kind of like freckles. Alarmed by the small bruises and lack of energy I assumed she had got into some kind of poison. The wife took her to the pediatrician and he began to cry after giving her a look and told us it looked like she had leukemia. With in an hour we had a blood test and then we were transferred here to Children Mercy in KC. By the time it was morning on Tuesday she had swelled enough to gain seven pounds. Seven pounds of what I don't know. Tuesday afternoon we had a meeting with the doctor and all the results from bone marrow test had came back. She was diagnosed AML. AML is a leukemia that usually affects adults not children and carries a worse prognosis as well as an extremely rough schedule of chemo. Within 10 days she will recieve 25 rounds of the mojo. After which her ability to fight infection will be zero. This is the hold your breath stage and hope and pray for the best. The other kids are taking it pretty good. We have told them what to expect and they seem to understand most of it. I have had a chance to catch my mind up to what has happened so far. Mikayla's diagnosis of AML M2 carries with it a pretty good shot at survival. I am not interested too much in stats, but from what I read it is the better of the M markers to have, not the best but maybe a good second place. Today the doctor explained things like this. In the leukemia cells are chromosomes. researchers look at these chromosomes to determine the risk of relapse of the cancer. Because of the tipp flip in the chromosome Mikayla is at a high risk for the relapse of leukemia. Because she is at a high risk the doctor said we had to do a bone marrow transplant. The transplant decreases her risk by replacing her own ability to produce cells with that of a healthy donor. When the donor marrow is inserted it starts taking over her cells. Thus the donors marrow and per say dna becomes her marrow and dna and begins its quest to fight off infection and cancer.The only real complications are infection number one and sometimes the new marrow produces cells that actually see her body as a threat and begins to fight everything it comes in contact with. There is only a slight chance for that to happen. The immidiate family has already been tested and we are waiting for results. The transplant team has told me that nobody else is able to come here for testing and that you are not able to be tested for the purpose of giving marrow specifically to Mikayla. All in all with the issue of bleeding and fever and a surprise visit by the doctor today everyone here is pretty drained. Emotionally I think we are just on auto pilot. Like most parents here you slowly become immune to the bad and tend to concentrate on the good. Currently her immune system has reached 0 like it is supposed to. Her other blood counts are a bit low so the next few days we will be trying to build those back up so that she does not have an issue with bleeding. Her chemo finishes up in I believe 2 more rounds or by tomorrow night. We get an update shortly on the results of remission. Last week or maybe the beginning of this week it was at 56%. Also, her shoulder has been bugging her so this evening we received and x-ray and they will let us know what is up with it later. That is about where we are currently I hope it is somewhat helpful. Thanks MB