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)

Flown in to UCSF for third time...

Saturday, October 1, 2011 8:42 PM, PDT

for those of you who don't know, abigail had a fever tuesday morning and was flown to UCSF because her white blood cells were low. she was put on two different antibiotics given blood and the next day was playing and acting her old self. she spent 3 days in the hospital with no fever. so they let her go to family house till her appointment on monday. so far she still has no fever and they don't know why she got one, nothing grew on the cultures, so maybe just a virus. she starts chemo again on monday, her 3rd cycle. we will go home on monday and finish chemo at home. she is doing very well, little side effects from the chemo. the hope is after her 3rd cycle her blood counts will start to come up, possibly 4th cycle. but soon we should see some positive numbers. i know we will. she is just full of energy, and feels a lot better. receiving the blood also helped a lot. her heart rate was very high while she was sleeping tuesday morning, a combination of her fever and low hemoglobin, which was 7.9 on monday dropped (with fever) to 6.9 so her heart has to work harder to pump oxygen to her blood cells. all of her numbers were up on monday and dropped with the fever. it is so crazy how things change from one minute to the next, literally. thanks to everyone who prayed. love you all

 

Abbi doesn't like the chemotherapy Olympics...

well abbi is on her last day of chemo for her 2nd cycle, we are sitting in hospital today cause clinic is not open, we are waiting for the chemo to get here. so i figured an update was overdue. anyway, things are good, since my last update abbi has become neutropenic, her wbc and anc has dropped, to be expected, but seems to be going up slowly again now. but her hemoglobin and platelets are dropping now. we have made it so far with no transfusions and we plan on getting through it with no transfusions. some good news is that she might be able to have this chemo in our hometown, so we are praying for that. would be such a nice break. my husband and son stayed home while abbi and i and a friend came down. and i have to say i am proud of dennis for holding down the fort while we were gone, bringing blake to school, going to work, cooking dinner, cleaning house. i have to admit i was nervous. but it all worked out. so after this chemo today we are headed home! excited and so ready to go home! so goodbye for today, Abbi's Mom

 

Abigail's Summer of outpatient Chemotherapy Treatments

just a quick update today, abbi is doing well. she has her next chemo sept 6th. if she does well and her blood counts don't drop too low, which they didn't this time, she may be able to go back to school. she is excited for this. she will be on meds to prevent sickness and infection. but this is promising news, and we are very happy. she is an amazing little girl. god is great! Mom

The hero is in you

Scorpions - Wind Of Change

day 3 of chemo and she did get sick this morning but that was it, so far so good. she will be able to go home sunday and when she comes back on sept 6th she will be outpatient for the 5 days. she will recieve the chemo in clinic every day for 5 days then home again till next time, schedule, every 28 days from first day of each cycle, so first day was on the 10th this time 28 days from now will be the 6th of sept, and so on. maybe some cycles could be at home, would be alot easier on us. there is also a child down the hall who needs prayer also, his transplant did not take and they are running out of options for treatment due to his previous treatment for leukemia that has damaged his liver. so goodnight everyone

Abigail starts chemo, Azacitidine, today.

Hi everyone, Abigail starts chemo, azacitidine, today. in just a few hours. she had to have her broviac line removed due to an infection 2 weeks ago, but that made her happy. so in between chemo the last week we went camping and swam, swam, swam! then she was readmitted to UCSF for the chemo that will be administered for 5 days every 28 days for at least 6 months. then they will check her bone marrow to see when she goes into remission again and then give her a large amount of donor cells to hopefully induce GVHD. so yesterday she did have to have a picc line inserted into her upper left arm, kind of like an IV, to give the chemo. she is down in the play room now and had spent most of the day in the school room learning about coral reefs and the continents. as long as she does not have bad side effects she will be able to go home next week after her bmt appointment with her transplant docs. only time will tell how this will effect her, one thing i know is it will work. it has to

Mom

Bad News in July 2011

we have some bad news about Abigail, she is relapsing. everything was great one month then we went to remove her line and her blood counts were low, so they did a biopsy and found abnormal cells. but the oncologists and her doctors have a plan they are discussing, so there is still hope. pray hard for her fast recovery, she is so strong and i will update as soon as they have a plan in place.

 

June 2011 Visit To UCSF TESTS

Abigail will have her central line removed sometime around july 14th. her blood engraftment came back at 100% donor. now they will check her bone marrow. she had a slight bloody nose this morning which worried me but i knew her blood counts were good so i had to say to myself she can get a bloody nose and still be healthy. i am going to worry about every cold and cough and bloody nose for a long time. we are going on 10 months and dr dvorak says it is a good sign she has made it this far. well goodnight all

written by Candice Courtemanche

June 2011 During the Full Moon Eclipse on 15th

Tuesday, June 14th, 2011 12:14 PM

sorry to everyone for the delay in updates. abigail is doing wonderful! june 2nd marked 9 months since her third transplant and she is still disease free. her blood work is awesome. we are in san francisco for her check up tomorrow, some IVIG. she is so close to being off isolation she can't wait! her 11th birthday is june 28th. so exciting, we can't believe how time flies. she has been going through all of this now for 3 years. strong girl, she has had to grow up the last 3 years in and out of hospitals. but we finally see a light at the end of a long tunnel. she is not completely out of the woods yet, but with every month that goes by i know for sure we will get there. thank you to everyone who prayed and supported us through it all. i will try not to make the updates so far apart, as i know everyone wants to know how she is doing.

Mariah Carey - Hero

In the midst of Earthquakes, Tsunamis, and Fallout... I am 100 % Donor

7 Months have gone by since the Transplant!

Quick update, Abigail is doing excellent! almost 7 months have passed since her transplant, just recently she had a bone marrow biopsy which showed no signs of her disease and she is still 100% donor. the docs are very happy with her progress. keep praying, cause god is working on a miracle.  Candice (Mom)

March 2011 is no fun for me

Quote from Abigail:
"uuuhhh i hate medicine, my broviac, haveing to be on isolation amd the rest of the stuff nobody wants. i am exsausted and want to ge to bed but i just cant....!!!! my eyes r burning some one call the fire department!!! WATCH OUT THERE IS FIRE COMEING OUT MY EYES!!! HAHAHA!!! Why was 6 afraid of 7??..... BECAUSE 7 8 9, GET IT 7 ATE 9 HAHA. Oh and for those of u that have kids or any family member that is younger than 8 i have bad news for them they r going to be 8 be fore they turn nine!!!! get it they wont even turn 9 cause they will be aten ha i am funny!!!!! LOV YA'LL HOLLA TO UR BOYS AND GIRLS FOR ME!!!!!!!!"

Abbi's health update as of Sunday, February 13, 2011

3:33 PM, PST

i haven't been doing much updating lately, Abbi is doing great. she received her second dose of donor cells on the 10th of February. these donor cells are hopefully supposed to help her immune system recover quicker. we will be so happy when she can stop this medicine and go back to school. she has lost some weight, so if she doesn't try to gain at least a pound or two by the 23rd, her next visit, they will give her another med. to stimulate her appetite. it is not easy to get someone to eat who doesn't want to plus she now wants to be a vegetarian. but the docs said it was OK as long as she was getting her protein elsewhere, eggs, yogurt, milk etc. so i am trying by buying whole milk instead of 2 percent, to add extra calories. carnation instant breakfast shakes add more calories. and keeping track of what she eats and track of her weight helps. well she has never really been a great eater, she has her good days and bad. but she will get there. she is playing with her friend now so i will go, everyone have a great day.  Mom/Candice

Tuesday, February 1, 2011

well her checkup went well on the 26th of jan. she will recieve more cells on the 10th. her engraftment came back again overall 100% but one cell type was 99% again. and her blood work is all over the place but the docs dont seem to be concerned. normal fluctuation. i am just sick of the ups and downs, she is 100% she is 99%. i just want her better already. so she is doing good, it is another beautiful sunny day here. so everyone have a good day.  Abbi's Mom Candice

 

January visit to UCSF for a checkup...

on thursday abbi received more cells from her donor. we have to watch still for gvhd since she is already 100 percent donor there is a higher risk. she got a small dose about 10 ml of cells which is actually 100,000 cells in the syringe. and come to find out these donor lymphocyte infusions can actually help her immune system recover faster, so they will check her in 2 weeks when we go back, there is a small possibility that she could get off isolation sooner than we thought. they have enough frozen for 1 or 2 more dli's. so they will decide whether to give more when her immune function tests comes back if they are still low she will receive another one. they want her immune system to be strong enough on it's own to fight any remaining cells of abbi's. so they will give the cells until it is. so the visit was good and now i feel better she got more cells. she has been doing so good, she has been saving her money lately to buy a digital camera. she wanted her own dsi but blake and her already have one to share. so she decided on a camera, which i think is a better choice. she has been taking lots of pictures and video with our video camera. she enjoys that. well i will go now thank you everyone for your prayers. Candice (Mom)

Dad Dennis

 Brother Blake

 Kitty

 Abigail and Blake

 Abbi

 Abbi