The Anonymous Donor Match Agrees to Help Abigail Once Again!

so the donor has agreed to go through with the stem cell collection. thank the lord! her blasts are increasing, they have increased her dose of hydroxyurea to 600mg from 300mg. they want her blasts to stay below 10,000. as of yesterday they were at 8500. they might have to admit her to start a different chemo to lower her blasts till they can figure out when she will get the stem cells. they want to time it just right, the donor has to have her blood checked for disease and that takes a couple days then collect the stem cells. 

i think the whole process i was told could take a couple weeks from the time she said yes till they collect the cells. so when they start this process it is 10 days of very intensive aml chemo then 24 to 48 hrs after chemo is done she will be moved to transplant to infuse the stem cells, then we pray they work their magic. in order to get graft vs host disease, which is what they want her to get, they will only give her a wimpy dose of one drug instead of all 3 to prevent it. transplant docs do not want to give you gvhd, this is a very sensitive situation, but i and we all know that abbi is VERY STRONG! we have only gotten through one victory, that being the donor aggreeing to this, now we have to get through chemo, stem cell infusion, gvhd and all the complications that come along with it. this is gonna be a very difficult road for her, please pray as you have been, pray for the donor cells to finally kill this dreadful disease, so our little girl can be a kid again!

Jan 15, 2012 11:50pm

Christmas 2011

 

A much younger Abigail 

from Abbi's Mom: 

"well things have taken a turn for the worst. abbi's myelodysplastic syndrome has progressed to acute myeloid lukemia. we found out last week and last night she was admitted to UCSF for a chemo called hydroxyurea to keep her blasts under control. the transplant team has a plan and are trying to contact the donor for stem cells. they will give her high dose chemo for about a week and then infuse the stem cells and still hopefully give her gvhd so the donor cells attack the lukemia cells. small chance of working but they said they wouldn't do it if they didn't think it would work. so this is our only curative option now. all we need is prayer right now. thank you to all and i will update as much as i can."

her Grandmom:

"All we can do now is watch and wait for the results of another experiment in Chemo therapy and Stem cell infusion.  We have had four more years with Abigail already because of the Doctors, Nurses, and staff at University College of San Francisco Teaching Hospital. We are grateful to them and awaiting the outcome of another procedure to save Abigael's life.  Faith in God, rather than mere hope is what will be her greatest ally."

This picture is of the Courtemanche family Christmas Card!

Abigail has a brother and his name is Blake. He has been her protector, her hero, and her younger 'big brother' for seven years now. He will be 8 on May 3rd of 2012. 

We all love him so much and yet it seems he has a single minded focus on his parents and sister and rarely wants to leave their side for any reason to visit with his extended family unless Abbi is visiting too. 

Christmas morning celebration!

Family Christmas Card with Abbi and Blake

Abigail after opening up her new net-book computer! 

 Abigail smiles BIG because she just opened a package containing her new cell phone!

 Daddy, Abigail, and Uncle Eric.

...and this is Blake who just opened his new X Box game player!  

...somehow Mommy escaped getting her picture taken because she was behind the camcorder!

 

Abbi just finished her 5th round of vidaza...

...and still haven't seen great results in her blood work, but the docs checked her engraftment levels last week and just got the results today, she is still 95-98% donor! they do think the vidaza is doing something. hopefully by end of 6th cycle she will be in remission or well on her way. then in february they will check her bone marrow, which can be a little different from the blood. and they will give her more donor cells. right now we are both fighting a cold, mine worse than hers, and she has a bad cough due to asthma and cold put together. cold and flu season, good thing she got her flu shot. now it is our turn. we got our tree today and it is beautiful. abbi and blake decorated it. i didn't do anything. it was nice. well actually i had to clean up the mess, but it is very pretty to sit there in the dark and look at the christmas tree lights. merry christmas everyone and god bless i will post more after the first of the year. Candice (Mom)

The Highs and Lows of a Superstar...

Abbi has been experiencing a few weeks of trips to the emergency room here in her hometown yet has been fortunate enough to be treated through what blood parts she needs and antibiotics and sent back home sometimes the same day, sometimes the next day, and this last time she was kept for three days.  She also has had more than her share of coughs, earaches, nosebleeds, interruptions from normal life, and hospital visits to fill an encyclopedia in the last three 1/2 years.I am known as grandma Mary to her because I am her Mother's Mom, and we have had a great relationship since the day that she was born excluding the time her family moved far away to Florida in 2006 and then returned to find I was moving to Sedona, Arizona only to return home again when I heard of Abbi's health difficulties. So mostly we have been very close and together often. This year everything changed when two things happened, one being her frequent visits to emergency and no one being able to spend time with her unless they can go to her own home where she has to stay when unwell, and the next being her desire to spend time with children her own age more often after moving into an apartment complex with her family almost two years ago when she turned 11. (times around the sun) So you can see that it is difficult now for me because I do love her very, very much.

So this is where I will come to post my feelings and my appreciation for all she has given to me and all that I remember of her visits with me over the last 11 years.  I will begin now to document my private and very precious life with Abigail Brianne. 

Ab-a-gi-el  The Angel of so many people's lives

 

Myelodysplastic syndrome or MDS

Myelodysplasia refers to a set of syndromes (also called myelodysplastic syndromes, or MDS) in which the normal process of making mature blood cells (red blood cells, white blood cells, and platelets) – known as hematopoiesis – is impaired.  Hematopoiesis begins with a hematopoietic stem cell (HSC) present in the bone marrow. The HSC is capable of differentiating into two more specialized stem cells: lymphoid stem cells and myeloid stem cells. Lymphoid stem cells differentiate into a type of white blood cell called a lymphocyte, while myeloid stem cells can differentiate into red blood cells, platelets, and a group of white blood cells called granulocytes and monocytes. In myelodysplasia, the stem cells do not differentiate completely; they remain as immature “blast cells” instead of maturing into normal red blood cells, white blood cells and platelets. This results in a disproportionately low number of healthy mature blood cells, a condition known as cytopenia. When there is a shortage of red blood cells, this is called anemia. The corresponding deficiencies in the other cell types are called leukocytopenia (white blood cells) and thrombocytopenia (platelets).  Each of these deficiencies is associated with a host of health problems such as bleeding (caused by low platelet counts) and infection (due to low white blood cell counts). Besides the effects caused by a deficiency of normal blood cells, myelodysplasia often produces increased numbers of immature blast cells in the bone marrow. The accumulation of excess blast cells may result in some of the blasts becoming abnormal (their morphology, or form, is defective). This process is known as malignant transformation, and leads to leukemia. Hence, myelodysplasia is often considered to be a premalignant, or preleukemic condition, necessitating careful monitoring and intervention.    Myelodysplasia Symptoms Myelodysplastic syndromes often do not cause early symptoms and are sometimes found during a routine blood test. Although the symptoms below may be indicative of myelodysplasia, other conditions may cause the same symptoms. A doctor should be consulted if any of the following problems occur: Shortness of breath Weakness or feeling tired Pallor (pale skin) Easy bruising or bleeding Petechiae (flat, pinpoint spots under the skin caused by bleeding) Fever or frequent infections Splenomegaly (enlargement of the spleen)  Diagnosing Myelodysplasia Since myelodysplastic syndromes, or MDS, are diseases of blood and bone marrow, careful analysis of both is critical. Complete Blood Count (CBC) The CBC often provides the first signs that a patient has MDS by revealing unusually low levels of certain types of blood cells. A CBC measures the following: The number of red blood cells and platelets The number and type of white blood cells The amount of hemoglobin (the protein that carries oxygen) in the red blood cells The portion of the blood sample made up of red blood cells (called the hematocrit) Peripheral blood smear This is a procedure in which a sample of blood is checked for changes in the number, type, shape and size of blood cells, and for too much iron in the red blood cells. Bone Marrow Aspiration and Biopsy Knowing how many blasts are in the bone marrow is important to accurately diagnose the type of MDS the patient has. Therefore, a bone marrow aspirate and biopsy are necessary. For this procedure, a needle is inserted into the hipbone or sternum to obtain a small piece of bone and sample of bone marrow, which are then analyzed under the microscope. Cytogenetic Studies In cytogenetic studies, the bone marrow cells are examined for specific chromosomal abnormalities. The presence or absence of these markers can serve as a guide to prognosis and treatment.

today starts abbi's 4th cycle of azacitidine, we are in san francisco till friday. today is halloween and she was a little upset not to be at home with her friends, but we are gonna try and go trick or treating around here. and from 2 to 4 today is the halloween party at the family house, and it is pretty cool we were here last year. so she brought her costume, which is a devil, she chose to be about 5 different things before settling on the devil, one was being an angel which she has the costume for. but she looks very pretty in her devil costume. i kinda wished she would have chose the angel. well today is gonna be long, appointment at 10am she has her IVIG, dressing change, blood draw, doctor visit, chemo, oh and FLU SHOT! she hates shots so don't know how this one will go, been a while since she had one of those. but we don't want her getting that nasty flu, we will all be getting one, and no we are not requiring it this year for anyone else. she has been doing well since her last update, only 2 fevers, one of them sending her to mercy at home in redding for the night, yes we she got to be treated at home, her anc was good and the docs here felt as long as the blood cultures were negative as they were last time they would be comfortable treating her at her home hospital. she did have to have another blood transfusion though, which there has only been 2 since we started this chemo. so all in all mild side effects, but this chemo calls for at least 4 to 6 cycles to see an effect on her blood cells. it seems her asthma is acting up again, cough and wheezing. which has always been her only symptom. so chest xrays to rule out pnumonia, both negative. just asthma, she has not had a flare up in about 2 yrs. since right after her 2nd transplant. but i guess asthma symptoms can happen whenever they want. so i am gonna close for now and update when i can. Candi (Mom)