Monday, September 27, 2010

Monday Clinic

Not much to say about today. Numbers were not what I had been praying for, what we ALL have been praying for. Lets start with good news though: Cytogenetics came back normal! YAY! This means no cells appear to be changing into cancer or MDS or anything else horrible! Still looking at faulty bone marrow...stinky stinky....but could be worse and it's not!

Counts:
WBS 3.39
Neutraphil 670 (low....)
HGB 10.3 (been that for a few weeks now so I feel comfortable red blood is good)
Platelets 24 (In the TOILET) Why aren't they going up!?

Charles and I leave for the cruise (won it through work) Thursday but we are leaving Addison Wednesday in Vero because he has work stuff Wed night and Thursday morning before the cruise. I am a nervous wreck about leaving her. This is the first time we are leaving Addison to go out of town...out of the Country..and with her "condition" it makes me a bit nervous. I know this will be good for us to get away and de-stress (is that possible?) and sleep in (definitely possible!). We need the break and I know Addy will be in great hands and have a blast with her Mimi and Grandaddy.

Friday, September 24, 2010

Wednesday, September 22, 2010

Addison Update

We had a nice relaxing weekend in Vero which was much needed after last week. We all had a great time at Grandaddy and Grandma Brown's 60th wedding anniversary party. Addison especially loved playing with the other children there. It was good to see her socialize since she hasn't had much of that in the past few months. I will post pictures later of our cutie!

We met with our Dr yesterday. Of course I was nervous as usual before we get a CBC. Her counts were as follows:
WBC 3.91
Neutraphils 1.59 (normal for her age is 1.2-9.0)
HGB 10.3
platelets 33

The Dr said the neutraphil count could be elevated due to the stress of the biopsy and the anesthesia. She said to expect it to drop back down to around 800 where it had been holding steady by next week. Or better said: don't be alarmed if it does.

The double biopsy results came back. Keep in mind in June the left side biopsy was at 10-15% cellularity. This time it was 15-20%, not a huge improvement but still an improvement. The right side came back at 50-60%! These numbers made more sense since we knew Addison was making blood somewhere, we just couldn't figure out where. The flow cytometry confirmed no leukemia but the Dr said she couldn't guarantee it wouldn't turn into it. We all knew that since aplastic anemia can be a pre-cursor for other illnesses. The biopsy did not reveal many megakaryocytes which are responsible for making platelets...this explains why the low number of platelets. They are the last thing to respond when the bone marrow is trying to heal. She did have many immature white cells which is what appeared to be blasts under the microscope to the pathalogist. Her red blood counts are normal but they were slightly abnormal in shape/size under the microscope. This could be normal in bone marrow that is working in overdrive. We will know for sure when the cytogenetics come back next week. The doctors all agree that we need to give Addison an additional 3 months to watch and wait to see if she continues to heal herself then repeat a double biopsy (this will mean minimum of 7 biopsys for our angel). Patience is a virtue...so I am told.

Friday, September 17, 2010

Moving Forward

Our entire family has experienced what I think has to be the worst 24 hours in our lives. Poor Addison has had an exceptionally hard 48 hours of being poked, prodded, and pricked. After her double bone marrow biopsy on Wednesday the doctor called me around 5:30 and told me the pathologist called him with alarming news. He saw 20% lymphoblasts in her marrow and blood smears. The pathologist was concluding Addison had pre B-cell Acute Lymphatic Leukemia. All of the doctors in the practice were completely shocked by his findings as they have never seen leukemia present itself like this. I asked the Dr if he could be wrong but he said probably not with the percentage being that high. He told us the only way to know for sure is to come back Thursday morning to the hospital and get ANOTHER biopsy and aspirate and also to draw spinal fluid to make sure the leukemia has not traveled to her nervous system. They were going to do a flow cytometery test on the aspirate which shows the specific marker on the cells that identify them as leukemia. About 30 minutes after the Dr called a nurse from the hospital called to go over what we needed to do to prepare Addison for the procedure and also that we were being admitted to the hospital immediately after the procedure to start her first round of chemotherapy. This was not explained to me by any doctor and I pretty much lost it. After everything we have been through and then to have them tell me they are 99% sure my daughter now has leukemia and we need to start chemo immediately to be aggressive...I just couldn't grasp what they were telling me. Charles was still on his plane to Boston so I couldn't even talk to him about it. I can't even explain the surge of emotions that we were feeling. It was hard to breathe to say the least. I just kept begging God to make this happen to me and not Addison. She doesn't deserve any of this.

Reva, Addison and I got to the hospital at 9:20 and Charles and my sister flew in and were there by 10. My parents flew all night from Seattle and arrived around 11. Charlotte drove over and got there about 3. Accessing the port was extremely traumatic for Addison again and afterward she gave everyone the cold shoulder for about 5 minutes...including me! :( Her counts were slightly better except her platelets which were at 26. They have to be above 30 for the procedures so she had to get a platelet transfusion. I was not thrilled about that. Finally at 1:30 Addison went back for her procedure. Keep in mind she couldn't eat or drink AGAIN today. The waiting while she is back in the OR is horrible. I am happy to report Addison woke up so happy this time from anesthesia! Charles and I walked back and there was our 17 month old precious baby girl looking like she was 4 years old. She was propped up on a bed with her Addy pillow behind her, a pretty blanket wrapped around her with all her stuffed animals surrounding her and she was calling mommy and daddy on the hospital phone! She then sucked down three apple juices and scarfed down 3 graham crackers and she was ready to rock and roll. She didn't seem to be bothered that she now had 6 holes in her back.

We went up to her new hospital room and fed Addison some real food while we waited for the results of the flow cytometry. We also became a little more educated on chemo and her first round would include a shot of chemo into her spinal column which would mean three days in a row being put under. UGH!

The Dr we had met with that morning who use to be the director of the hematology/oncology department came to our room around 5:30 to tell us the flow cytometry showed NO LEUKEMIA! yes this is absolutely wonderful news and we were so thankful. On the flip side we sat there looking dumb founded because we didn't know if we should believe them. How could they make us think our daughter had this terrible cancer if there was still a chance it wasn't true? Apparently the pathologist saw immature lymphocytes (WBC) which can resemble leukemia blasts. It appears her bone marrow is on the mend and it is spitting out a high number of these new baby cells and the pathologist saw such a huge amt which is rare and assumed they were cancer. This is obviously unacceptable but now is a time to put this behond us and celebrate and not be mad. There will be a time for that but as of today we are enjoying Addison and trying to make sure she doesn't remember this horrible experience. And of course thanking God for the good news!

Wednesday, September 15, 2010

A Loooong Day

It has been an extremely LONG day but with a good ending so we will take it. Addison, Daddy, Grammie and I were at the clinic at 8:45 this morning. Addison had to stop drinking fluids by 8am and hadn't eaten anything since last night's dinner. Accessing the port today was miserable. Her CBC was slightly better than Monday (an increase is an increase so we will take it).

WBC 3.93
Neutraphil 740
HGB 10.5
Platelets 28

We had Dr. Reed today, we had never met him before, but really liked him. After the port access was completed and we chatted with the Dr for awhile we were sent to a room to wait...and wait...and wait.... We were finally taken back to prepare for the procedure at 12:15 where we continued to wait....and wait....and wait another hour! Our poor baby started asking for "juice?" "milk?" "eat?" around 12:30. We had to keep distracting her. Grammie was a big help in that department. They FINALLY took her back at 1:15 (4 1/2 hours after arriving to the clinic).

They did let me into the procedure room and hold her while they gave her anesthesia. Once she was out I put her on the table, kissed her sweet nose and walked out leaving her care in God's and the doctor's hands. Not an easy thing to do as a mother. I met Charles and Reva in the recovery waiting room. Poor Charles had to leave to catch a plane to Boston at 1:45 and Addison woke up at 1:50. Both biopsys went fine and they decided to do an aspirate as well. We should have those results by Friday. Addison woke up a bit cranky. That is to be expected. Then she gobbled up two bags of teddy grahams and slurped down an apple juice. She munched on some cheese puffs in the car and passed out about 5 minutes from the house. She is still sleeping off the anesthesia.

We are glad today is over and our princess baby came out of it ok. I anticipate her being a bit sore but as usual her spirits are high! I will post pictures soon. You have to see the adorable dresses her Aunt Char Char made her and her Great Aunt Merc embroidered! ADORABLE! ....to say the least!

Thank you everyone for your continued prayers and support. They help tremendously.

Tuesday, September 14, 2010

Staying Hopeful

We took Addison to the Tampa Hematology Clinic yesterday because they needed to flush her port again and draw the final blood test. She did so much better with the port access this time which was a relief to both mommy and daddy! We were successful at distracting her with lots of bubble blowing, singing and reading books. Her CBC came back and it was not great. Her platelets have dropped again this time to 25 (lowest they have been since before July 19th).

WBC 3.3
Neutraphil 700 (lowest they have been in a few weeks)
HGB 10.3 (11.4 last week)
platelets 25 (37 last week and 47 week before but 28 week before that)

Because Addison's counts dropped again the Dr recommended doing another bone marrow biopsy. We knew this would have to be done again but was not anticipating it would happen this soon. We need to know exactly what her body is doing and your peripheral blood (CBC) only gives you a snapshot. We need the full picture. So this means our poor baby has to be put under AGAIN and is getting a double biopsy this time. They will draw a sample from each hip bone. The reason they are doing this is because they have seen significantly different numbers from each side in other cases. So Addison will now have two scars on her beautiful back instead of one. :( This is taking place tomorrow morning. Not a lot of time to mentally prepare but we need answers and the sooner we get them the sooner we know what to expect moving forward.

When Addison had her first biopsy in June her bone marrow cellularity (% that bone marrow is functioning) was around 10-15%. Normal for Addison's age is about 80%+. When she had her second biopsy July 20th it was not a clear sample and they guesstimated her cellularity to be between 20-40% which showed great improvement only 6 weeks after her 1st biopsy (they were expecting to see it at 5% NOT increased!). Almost 8 weeks have passed since last biopsy and the doctors would have liked to have seen Addison's numbers a little more stable or higher. Your bone marrow can be functioning at a decent % before the higher numbers show up in your peripheral blood (CBC) and that is what we need to determine. If her cellularity has dropped we will be starting treatment, if it looks like her body has hit a plateau then we will seek treatment to give her a boost, if her body is improving we continue to watch and wait. We will not have results back until Friday afternoon at the earliest. The sample has to calcify for 24hrs before being reviewed by the pathologist. We will keep you posted and please continue to pray for our darling. Thank you.

Tuesday, September 7, 2010

What a Wonderful Long Weekend

We had a great weekend. We took Addison to the zoo, beach, pool, park and watched Gator football! She enjoyed every minute of her family weekend. Last night Aunt Ashley came over for dinner and she had such a great time showing off for her. She was quite a ham and stayed up till 7:30! She is usually asleep by 7!

She had her weekly CBC this morning at our pediatrician's office. Daddy was able to come to this visit with us for a nice change. Her counts were OK. We can't decide if maybe their machine is slightly off since her last low numbers were on their machine and then fine when we went to the hematologist's office. We will meet with the hematologist Monday morning to flush the port (yuck!) so we will see where her numbers are then.

WBC 3.3 (3.83 last week)
Neutraphils 0.9 (1.16 last week)
HGB 11.4 (10.8 last week) EXCELLENT!
Platelets 37 (47 last week)

We think the WBC is OK, that will fluctuate. It is still lower than normal since normal is above 6. The platelets going back down is what concerns me but it was not a huge decrease so we will wait and see what hematologist says before freaking out too much. :) The red blood is wonderful, 11.4 is a solid number. Normal is 8.9-12.8 so she is perfect! I am holding to that piece of good news for now!

Hope everyone had a wonderful weekend.

Wednesday, September 1, 2010

Not Where I am Suppose to Be!




Addison is officially in the climbing stage! This means more work for mama...yay! Low platelets and climbing don't exactly go well together so I now hover like a helicopter around Addison at ALL times. She will drag her chair close to something she can't get on by herself and use it as a stepping stool. Smart little thing she is....UGH!