Addison had a Dr apt yesterday for her 1st CBC in almost 3 weeks! It was so nice to live a somewhat normal life for a few weeks without doctor apt dictating our week's schedule. Addison was due for her port flush (happens every 5 to 6 weeks) and surprisingly that went really well! Addison is no longer terrified of bandades so that seems to help since I have to apply the numbing cream an hour before her apt to help numb the port site. Her CBC on the other hand did not go well, which it typically doesn't when they pull blood from the port. Her counts had dropped across the board which really disturbed me since her RBC has been steady for so many months. The Dr assured us these fluctuations can be normal and last years when you have a compromised bone marrow but with my hormones so out of whack I just didn't handle the news very well at all. I felt like we were back to square one and back to the weekly roller coaster of fluctuating levels. Her counts were:
WBC 3.66 (down from 5.07)
HGB 9.1 (down from 10.9)
platelets 31 (actually up from 29)
Neutraphil 741 (down from 1190)
We had a great Thanksgiving holiday in Vero. Addison lived outside the whole time we were there! Will post the few pics I took later.
Tuesday, November 30, 2010
Friday, November 26, 2010
Sunday, November 21, 2010
Weekend Fun
We went to Jacksonville for the weekend because we were co-hosting a couple's shower for our good friends Andrew and Lynn. The shower was a big success and it was great for Charles and I to have some fun with our old Jax friends!
Our tenants moved out of our Jax Beach house so Charles spent Friday night and all day Saturday painting and fixing up things and I did a light cleaning Sat morning before some new people came by to look at it. Guy and Reva are wonderful and have a client who owns a professional cleaning company who specializes in deep cleanings of vacant property so they had them clean the house today. We have someone finishing up the painting this week and then we will get carpets cleaned and hopefully find new tenants ASAP!
Addison had a wonderful time with Grammy, Pa, Uncle Kelley, Aunt Char Char, Aunt JJ and cousin Caleb and lets face it Daisy and Sadie are her absolute favorite! I am going to post some pics of Addison's first trip to the fair (the animals were a HUGE hit but I think we should have waited a year before putting her on the Catepillar roller coaster with Daddy), baking with Grammy and the Festival of Trees with Mimi and Santa!
Hope everyone has a Happy Thanksgiving and we will post again after Addison's CBC a week from Monday! (it will be 3 weeks since last CBC)
Our tenants moved out of our Jax Beach house so Charles spent Friday night and all day Saturday painting and fixing up things and I did a light cleaning Sat morning before some new people came by to look at it. Guy and Reva are wonderful and have a client who owns a professional cleaning company who specializes in deep cleanings of vacant property so they had them clean the house today. We have someone finishing up the painting this week and then we will get carpets cleaned and hopefully find new tenants ASAP!
Addison had a wonderful time with Grammy, Pa, Uncle Kelley, Aunt Char Char, Aunt JJ and cousin Caleb and lets face it Daisy and Sadie are her absolute favorite! I am going to post some pics of Addison's first trip to the fair (the animals were a HUGE hit but I think we should have waited a year before putting her on the Catepillar roller coaster with Daddy), baking with Grammy and the Festival of Trees with Mimi and Santa!
Hope everyone has a Happy Thanksgiving and we will post again after Addison's CBC a week from Monday! (it will be 3 weeks since last CBC)
Friday, November 12, 2010
2nd Opinion
Addison met with Dr. Sandler, the head of the hematology/oncology dept at Nemours, on Thursday. The apointment went really well. Dr. Sandler started the visit by telling us how impressed he was with how thorough our doctors have been here in Tampa. He said that it would have taken him months to get to the point to run some of the very specific genetic tests they ran so quickly. He then examined Addison and was amazed (like every other doctor that meets her) to see how completely normal she acts and looks!
He had reviewed all of her biopsy slides with his pathologist and they concluded that her bone marrow has improved substantially everytime it was drawn. His professional opinion was that Addison was exposed to some virus or toxin that caused her bone marrow to fail and that her body is SLOWLY repairing itself. He did not think we should do the ATG/Cyclosporin treatment in January or ever really. The only way he would do that treatment is if Addison's number sigificantly decrease back to severe aplastic anemia levels. We DONT want that! He did say he would repeat biopsy in Jan if her platelets have not increased from where they are today (29) and see what her marrow is doing. He said there are other drugs that have less long term side effects as the ATG that could possibly stimulate platelet production. We will explore those options further if we need to (pray we don't).
We asked him if he felt there was anyway we were missing anything or could it be anything other than this viral induced "bone marrow failure". He was confident it was not MDS and definitely not Leukemia! He made a good point to say that with these cancers/conditions you get worse with time, usually pretty quickly...in Addison's case she has really only improved her overall condition. This was wonderful news for us to hear.
All in all the apointment was what we hoped for and it put everyone's minds at ease a bit. We wanted to confirm that the course of action our doctors have planned is what is best for her and Dr. Sandler agreed with everything they have done/doing. We asked him his opinion on keeping the port and he said he would take it out since we are not using it. I am going to discuss that further with our Dr when we see her next the monday after Thanksgiving! In the mean time we just need Addison's marrow to kick it into high gear and work on replenishing her platelets and neutraphils!
He had reviewed all of her biopsy slides with his pathologist and they concluded that her bone marrow has improved substantially everytime it was drawn. His professional opinion was that Addison was exposed to some virus or toxin that caused her bone marrow to fail and that her body is SLOWLY repairing itself. He did not think we should do the ATG/Cyclosporin treatment in January or ever really. The only way he would do that treatment is if Addison's number sigificantly decrease back to severe aplastic anemia levels. We DONT want that! He did say he would repeat biopsy in Jan if her platelets have not increased from where they are today (29) and see what her marrow is doing. He said there are other drugs that have less long term side effects as the ATG that could possibly stimulate platelet production. We will explore those options further if we need to (pray we don't).
We asked him if he felt there was anyway we were missing anything or could it be anything other than this viral induced "bone marrow failure". He was confident it was not MDS and definitely not Leukemia! He made a good point to say that with these cancers/conditions you get worse with time, usually pretty quickly...in Addison's case she has really only improved her overall condition. This was wonderful news for us to hear.
All in all the apointment was what we hoped for and it put everyone's minds at ease a bit. We wanted to confirm that the course of action our doctors have planned is what is best for her and Dr. Sandler agreed with everything they have done/doing. We asked him his opinion on keeping the port and he said he would take it out since we are not using it. I am going to discuss that further with our Dr when we see her next the monday after Thanksgiving! In the mean time we just need Addison's marrow to kick it into high gear and work on replenishing her platelets and neutraphils!
Wednesday, November 10, 2010
Happy Wednesday
Addison had her doctor apt yesterday. Going every two weeks seems to really help Charles and I (more me) with our anxiety about the CBC results and Addison didn't mind it yesterday at all. She was an angel! We thought they were good results. We feel our doctor is hesitant to confirm this is positive since it is such a small increase and we are getting a second opinion at Nemours tomorrow. She did say steady results is better than declining. Also Addison is getting over her first cold EVER so that could affect her WBC counts!
Here were her counts:
WBC 5.06 (highest ever since this roller coaster started in June)
Neutraphil 1.19 (slightly lower than 2 weeks ago but staying steady in 1000's)
HGB 10.9 (steady in 10's for months now)
Platelets 29 (23 three weeks ago, 25 two weeks ago...so maybe a small steady increase) will see in three weeks.
We don't go back to our hematologist in Tampa until the Monday after Thanksgiving and she will have the port flushed. YUCK! Then if her platelets have not increased to the 40s/50s by end of December we will repeat biopsy Jan 5th and based on those results we will plan to start treatment early January. Needless to say all we want for Christmas is Addy's bone marrow to kick it into high gear! Keep the prayers coming...God is working hard at heeling her!
Here were her counts:
WBC 5.06 (highest ever since this roller coaster started in June)
Neutraphil 1.19 (slightly lower than 2 weeks ago but staying steady in 1000's)
HGB 10.9 (steady in 10's for months now)
Platelets 29 (23 three weeks ago, 25 two weeks ago...so maybe a small steady increase) will see in three weeks.
We don't go back to our hematologist in Tampa until the Monday after Thanksgiving and she will have the port flushed. YUCK! Then if her platelets have not increased to the 40s/50s by end of December we will repeat biopsy Jan 5th and based on those results we will plan to start treatment early January. Needless to say all we want for Christmas is Addy's bone marrow to kick it into high gear! Keep the prayers coming...God is working hard at heeling her!
Wednesday, November 3, 2010
Double the Sugar...Double the Spice
Charles, Addison and I are expecting another baby! And yes we already know it is a girl! Isn't technology awesome!? I am 16 1/2 weeks pregnant. We found out in August and with everything going on with Addison we were keeping the news to family. I am sorry it has taken me so long to update our Blog followers. Her due date is April 18th so her and Addison will be 2 years and 2 weeks apart!
I will be the first one to say I thought for sure I was having a boy because this pregnancy has been so different than Addison's but the sono technician has assured me there is no room for error when she tells me with 100% certainty it is a girl. We are so very excited and I have already picked our nursery bedding and furniture!
Addison is the cutest almost-big sister you have ever seen. She carries the sonogram picture around and kisses it saying "baby". Then she kisses my belly button and says, "Baby behind Mommy's button!" So cute! She does NOT like seeing me get poked by the doctor so Charles has accompanied me to all appointments. I hope Addison knows the feeling is mutual...I don't like seeing doctors poke at her either!
We do not have a name picked out yet...we were planning on Charles Guy Bond III (Trey) but as we can see God had different plans for us! That's OK though, we look forward to all the fun 2 girls will bring to our home.
Monday, November 1, 2010
Trick-Or-Treat!!!!
Yesterday was one of those days that just made my heart bubble with love for being a mother! There is nothing more satisfying in life than seeing my daughter happy and taking in everything going on around her.
Aunt Char Char came into town this weekend and Addison is very vocal with her demands. She had no problem telling Char Char to sit and color or sit and play with her. Saturday while watching the Gator game Addison wore her orange and blue tutu with pride and twirled all around the house only stopping to throw her arms in the air and yell "Touchdown...YAYYYY!!!!!! Go Gators!!!!!" Daddy was a very proud Daddy! During halftime we carved our pumpkin! Addy was mesmorized by the pumpkin guts.
Sunday, Halloween, Addison decided to wake up at 5am. She did go back to sleep for about an hour. It must be a rule in the Children's Guide to Life Book that they must deprive themselves of sleep the night before a big day and then refuse to nap! Once we put on Addison's Minnie costume all crankiness went away...and can I please say that we had the cutest Minnie Mouse I have ever seen?! We went to a great Halloween party at the park at 2 and Addison said "Party fun!" the whole way home. We came home and relaxed for an hour or so before meeting some friends, I mean Sleeping Beauty and Snow White, to go trick-or-treating. We were interested to see how Addison would do and to our great surprise she loved it and even said "Trick-or-Treat"! Of course not to the people handing out candy but as soon as we would walk away the words would come out of her mouth! What can you do?! She got to stay up about an hour past her bedtime and also go to eat some of her treats on the way home! That's a good day in the life of a 19 month old!
Hope everyone else had a fantastic holiday. Above are some pics of the weekend and our professional pumpkin patch pics that we took in Jax.
Aunt Char Char came into town this weekend and Addison is very vocal with her demands. She had no problem telling Char Char to sit and color or sit and play with her. Saturday while watching the Gator game Addison wore her orange and blue tutu with pride and twirled all around the house only stopping to throw her arms in the air and yell "Touchdown...YAYYYY!!!!!! Go Gators!!!!!" Daddy was a very proud Daddy! During halftime we carved our pumpkin! Addy was mesmorized by the pumpkin guts.
Sunday, Halloween, Addison decided to wake up at 5am. She did go back to sleep for about an hour. It must be a rule in the Children's Guide to Life Book that they must deprive themselves of sleep the night before a big day and then refuse to nap! Once we put on Addison's Minnie costume all crankiness went away...and can I please say that we had the cutest Minnie Mouse I have ever seen?! We went to a great Halloween party at the park at 2 and Addison said "Party fun!" the whole way home. We came home and relaxed for an hour or so before meeting some friends, I mean Sleeping Beauty and Snow White, to go trick-or-treating. We were interested to see how Addison would do and to our great surprise she loved it and even said "Trick-or-Treat"! Of course not to the people handing out candy but as soon as we would walk away the words would come out of her mouth! What can you do?! She got to stay up about an hour past her bedtime and also go to eat some of her treats on the way home! That's a good day in the life of a 19 month old!
Hope everyone else had a fantastic holiday. Above are some pics of the weekend and our professional pumpkin patch pics that we took in Jax.
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