Update a Little Late

I apologize for slacking on the Addy update. We went to the Dr Monday morning. It was a LONG process. We were only there to get a CBC and speak with the Dr about test results and we ended up being there over 2 hours. UGH! They are NEVER on time...but they do take good care of my baby so it is worth the wait (so I tell myself). The Dr confirmed the one bad genetic test came back negative! Half of the ALPs test came back negative and we are waiting on the other half. It should be in by next week. Addison's counts continue to be down and she needed platelets. She will get platelets weekly. We opted to do platelets Tuesday so that she would have enough to get her through the long weekend. Here counts were even lower Tuesday (white blood count being the lowest they have ever been) and we were there for FOUR hours for what should have taken 2 hours. UGH!!!!!!!!!!!!!! Oh and they had to stick her twice for IV to work. Not a happy baby or mommy but Addison really is such a trooper. She watched a little Blue's Clues and then I followed her around with her IV pump while she played with toys while the platelets were tansfused into her body.

After speaking with the Dr the plan as of now is to continue to wait (boo). They want to observe Addison for a solid 4 weeks. They will then do a bone marrow biopsy to confirm her current bone marrow cell production % (she was at 15% last time and they anticipate lower now) and make sure no leukemia cells are present. I am sick with worry about Leukemia. The same time they do biopsy they will put in a port. I am not happy about this, it makes my heart hurt to know Addy will have a port for about 6 months to a year. This is what cancer patients receive. The purpose of the port is to avoid sticking Addison with an IV every day/week for the next few months so I guess that is good. I just don't like the idea of her having something implanted into her chest near her heart. Then she will stay in the hospital for no more than 5 or 6 days and receive the ATG treatment. Addison will not have an immediate response to this treatment. It typically takes between 30 and 90 days before you see her CBC rising and it could even require a second dose of ATG. Let's pray we see a response in the first couple months. PLEASE Lord let her respond fast! It is helpful knowing more of what the plan will be...this is all based on the two pending tests coming back negative. This disorder is full of waiting...as long as the outcome is positive I am fine waiting. My poor stomach isn't thrilled but that's OK. :)

We love you all and appreciate the prayers...please keep them coming!

Finally Some GOOD News!

OK so I have been home all week going stir crazy thinking about these genetic test results. I finally called the office yesterday afternoon to see if any results had come in. The nurse told me two were in but the Dr was not in to review them so she could not tell me the results. Naturally I spent the entire night researching what the diseases were (Fanconi and ALPS) and I concluded somewhere around 3am we would be living a nightmare if these tests came back positive. The Fanconi in particular is a very scarey and nasty disease that is not easily treated. The nurse told me she would call me today before 11am. Well after spending my entire night and now morning feeling sick to my stomach with worry I finally called back at 11:25 asking for results. She said the Dr was reviewing them now and she would call me in 5minutes. Well she did and she told me that both the Alps and more importantly Fanconi came back NEGATIVE!!!! WOHOOOOOooooooooooooo! What a huge relief! I guess there are two parts to the Alps test and one came back negative and we are still waiting for the other part. I believe this is the last test we are waiting on but I will confirm that Monday at our next apt. My understanding is that once all results are back we will be able to move forward with treatment. That is what I think we are all waiting for so we can actually start fighting this thing off and get back to living! Poor Addison and Mommy are going stir crazy being on house arrest....but I would never take any chances with my little doll baby. Better safe than sorry.

Enjoy the new pictures. Out of all of my shoes to choose from Addison chose my crocs. Really?! Must get her taste from her Daddy! :) JK Oh and the insurance company totaled the car! Clare and Dan were in town Father's Day weekend so that Charles and I could go out and see a movie. Dan's family was sweet enough to sterilize their house so that we could come over and enjoy their Father's Day brunch with them. It was a very nice day and Addison and Daddy enjoyed leaving the house and being around new company.

We are not on the other side of the hurdle yet but at least we are starting to see just how big the hurdle will be. We still need and appreciate every one's prayers for Addison to respond to treatment and have a speedy recovery. She is such a special little girl and we know she is loved by so many. Thank you all!

Happy Wednesday

We had a good day today. We found out this morning that our car is totaled! This is good news considering we were planning on selling the Mercedes to get something bigger. We would have preferred good news concerning Addison but we will take good news where we can get it.

Addison became addicted to Blues Clues while in the hospital. She saw an episode where they used their imagination to make a box whatever they wanted. We got a box in the mail and Addison had so much fun trying to fit in it and make it a car! So cute!

Later today Addison received a package!!! Her cousin Ryan went to Build-A-Bear and made Addison an adorable bunny and named her Bonny Honey! She even came with a cute box to take her to and from Dr appointments and the hospital. Addy LOVES her....as you can see in the pictures above. Thank you Ryan!

Off to car shop....UGH! Sounds fun but really it is miserable. I hate making big decisions.

Yes! This Just Happened

Yes this just happened, yes it is now 4am! Yes when it rains it pours at the Bond house!

Some drunk ding dong hit our parked car outside our front door. My mom was asleep in the guest bedroom and woke up to the loud crash. She looked out the window and saw a dark silhouette walking away and told Charles "some guy just hit that car across the street...I am so glad it wasn't mine!". He said "Holy Cow that is MY car!". Thanks mom!!! Apparently the guy had been drinking at the bar down the way and decided to drive and t-boned our car right out of its parking spot! Of course the guy left the scene of the accident. We would rather him hit our parked vehicle then kill someone.

Update: Charles went and bought glass chalk and wrote on the back of the car..."Brad was here....drunk....and ran from the scene!" Hey, gotta laugh at these things to keep from crying. :)

Monday Update

Addison and I woke up bright and early this morning so we could be at the clinic on time for our 8:30 appointment. This was suppose to be an in-and-out apt to check her CBC (complete blood count) and see if she would need a platelet transfusion today. Well 2 hours later we found out her platelets were at 11,000, her red blood cells were good at 11 (they were 11.1 on Friday so that is good) and her white blood cells were even lower at 2.13. Not good on the white blood cell count, her neutrophils dropped from .11 (which is already very low) to .03. Your neutrophils help make up your white blood cells and fight infections. So now we have to be even more strict on what Addison can and can't do. Poor baby. We were told to come back at 1:30 for her platelet transfusion.

Mimi came into town today to be there with Addison and I while she received her platelets since Daddy had to work. She did pretty good. It took two tries to get the IV in and then she was ready to rock and roll. We watched a Blues Clues movie and read books. We finally got out of there at 4:00! It was a LONG day but so much better than being back in the hospital. We have to get use to it too since this will be a weekly occurrence for quite awhile. I also found out today that after she goes into remission we will still have to go to a clinic monthly for 5+ years to check her levels. This disease is definitely changing our lives in more way than one.

Keep the prayers coming and thank you everyone for thinking of us and all the help you are giving! We really appreciate it.

Our First Clinic Visit

Addison had a big day today. Aunt Char Char left this morning while Addison was napping. We really enjoyed having her here. Then Daddy, Addy and I went to the All Children's Clinic to check Addison's blood levels. Her red blood cell count was still in a normal range which was expected but nice to have confirmed. Your RBCs typically last 120 days so hopefully Addy will not need another RBC transfusion for awhile. Platelets last around 7 days and when you receive transfused platelets they usually don't last as long b/c your body destroys them. Addison's platelets after the transfusion were 111,000 and today she was at 39,000. She will go in on Monday to receive another platelet transfusion. This will prevent Addison from bruising and possible internal bleeding if an accident should occur.
When we got home from the clinic Mrs. Sammons and Ashley came to visit. Addison was very excited to see them. She finally started acting like her normal funny self this afternoon and kept us all in stitches the entire time! It was good to hear her giggling, singing and to see her dance. Addison recently learned how to twirl so she will twirl and twirl until she can't stand up anymore! It is adorable. She has entered into the picky "I won't eat ANYTHING you put in front of me" stage. Very frustrating for an already over paranoid parent (just became that way in the last two weeks). The Dr said she was not worried about it as long as she doesn't drop weight and she continues to drink fluids.
Hope everyone has a great weekend. TiTi (Addison named my sister that) and Dan will be here this weekend so Charles and I can go out on a date! Yippee our first one in 3 1/2 months!
Please keep Addison in your prayers. Night Night.

Home Sweet Home

I wanted to share some pictures of Addison's last few days in the hospital and some from when we got home. We have all enjoyed our first night home and being able to sleep in our own beds! Addison fell asleep around 7:15 and slept until 7am! We went to bed around 9 and I got to sleep in until 9am! YAY! Thank you Aunt Charlotte for watching Addison so mommy could sleep! :) Lord knows I needed it. Addison has napped for 2 hours so far today. Poor baby did not get enough sleep in that hospital! Maybe the sleep will make her bone marrow start working! Just wishful thinking! :) We have an apt tomorrow with the hemotologist to see how her body is responding to the transfusions...I will keep you posted on that visit tomorrow.

On a fun note...Addison can now say her name and show you how old she is! She calls herself Addy and holds up her index finger to show you her age. It is so adorable! Her vocabulary is rapidly expanding. She can say a total of about 25 words that you can clearly understand. She has a hard time pronouncing the letter "f" which tends to sound like "t" when she says it. Other than that she is doing great with words for being almost 15 months old. I think I have a little neat freak on my hands too which only a fellow neat freak such as myself can appreciate! If she sees garabage laying around she takes it straight to the garbage can. If she spills her milk she gets very upset until it is cleaned up and when she takes a toy she usually puts it right back where she finds it. I LOVE IT! I hope this means we won't have a messy teenager room to deal with in a few years!

Wednesday Update

The Bond Family received disheartening news yesterday. Addison's bone marrow biopsy came back showing that she has borderline Severe Aplastic Anemia. Basically this means her bone marrow is failing and it affects approximately 3 out of every million people in the US. It is failing to create red and white blood cells and platelets. Her red blood count had dropped yesterday to below normal range and her platelets were still at 3,000 and not showing any signs of increasing so we the doctors decided Addison needed a blood transfusion and platelets. They started the transfusions around 6pm. The platelets took about an hour and then they started the red blood cells transfusion around 8:30 and it took close to 5 hours. Needless to say it was a day full of tears and anxiety of what comes next and a night full of more tears and no sleep.

We did wake up with the best news we have had in over a week and that was: we got to go home today! YIPPEEE!!! Of course this good news came with some not so good news. Addison's white blood cell count was the lowest it has been. A normal range is above 6 and she is less than 3. This makes her very prone to illness and infection. It is wonderful being home. Thankfully Charlotte is here and she was able to have our carpets cleaned and started cleaning all of Addison's toys. We will have to be extra careful with her and make sure we do not put her little immune system in danger. My sister had been in town helping us Friday through Monday and she was sweet enough to take Tootsie for us. Addison can be around animals but we have a long road ahead of us and it is easier on us to have Toots to worry about. Addison was so happy to see her home and play in her room and her playroom! Charles, Addison and I are all exhausted so it is an early night for us.

Moving forward Addison will go to the hemotologist's office Friday to have her blood levels checked and see how her body is handling the transfusions. When her levels get low again she will require more transfusions but they will take place in the clinic. Aplastic Anemia can be idiopathic (don't know why), viral or genetic. They are leaning toward idiopathic but have run a series of tests to confirm it is not viral or genetic. If idiopathic is confirmed then we will start ATG treatment which will require Addison to be hospitalized for about a week and then it takes about 90 days to fully take effect. This treatment has a 75% chance of cure. If it doesn't work she will go on to bone marrow transplant(please pray it doesn't get to this). If the tests come back showing it is genetic she will go straight to bone marrow transplant (pray it is not genetic). They believe her condition is too severe to be viral but if it is viral they will pinpoint virus, treat that and she will fix herself. The tests we are waiting on should be back within 3 weeks and until then they will manage her blood levels with weekly dr visits and we will keep her away from potentially dangerous situations (big crowds, dirt, pools, falling) until the real treatment can begin.

This whole situation really blows our minds. You would not know by looking at our sweet little girl she is carrying around an extremely rare and dangerous disease. She is still in great spirits and has a smile on her face! We are so proud of her and how well she handled all the needles, poking and prodding. There is a lot more to come but she has so many of us fighting with her and reassuring her with love that she will get better and get through it. We will continue to pray and believe that God will get her through this. Thank you all for your prayers and we will keep you updated.

Monday Update

Sunday brought us good news that Addison's white and red blood cell counts were back into normal range and her platelet count was 6,000. Keep in mind that anything under 10,000 has a large margin of error. Either way having the normal red and white cells was encouraging. The Dr was very confused by these numbers and was no longer as confident that Addison might have Aplastic Anemia. We still had the bone marrow biopsy scheduled for today either way to confirm or decline the suspicions.

Charles, Addison and I got little sleep last night. Addison had to be put on IV fluids starting at 2am to ensure she would not get dehydrated while waiting for the procedure since she was not allowed to eat or drink. Then Addison was woken up at 5:45 to give 4 vials of blood for special testing and the routine CBC (complete blood count). Her CBC was not as promising as yesterday's report. Her white & red blood counts were back down below normal range and platelets back to 3,000. Needless to say this roller coaster ride is taking its toll on all of us, but we remain strong for our Addison. We tried to forget about that somewhat negative news and focus on her procedure which took place around 10:40 this morning. I was extremely nervous about the anesthesia and the possibility of internal bleeding due to low platelet count. Besides Addison's foul mood when she woke up it went well and she does not seem to be in too much pain. They took the bone marrow sample through a small incision out of her hip bone via the back of her body right above her diaper. We just spoke to the Dr and he confirmed it is NOT Leukemia! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We are so relieved to know it is definitely NOT that.

We will know if it is the Aplastic Anemia tomorrow late afternoon. If it is Aplastic Anemia they have to figure out if it is one of the 3 genetic types. They sent the blood off this morning which will determine that. If it is a genetic type Addison will require a bone marrow transplant. If it is regular aplastic anemia she will remain in the hospital for an additional 5 days to start a round of treatment and it will be about a year process in total. Good news is that this can be curable. Again we pray it is not aplastic anemia and that there is just a virus in her body causing her immune system to attack the platelets. We will know for sure tomorrow.

I know there are so many people out there praying for Addison. We have heard from multiple people she has been added to church prayer lists. We are so very thankful for that and hope you continue to keep her in your prayers for a speedy recovery. She is dying to get in a pool and we hope we can make that a reality for her very soon! (she wakes up every morning saying Pool...Pool....Pool....Poooooooool) :)

Not What We Wanted to Hear

My hiding spot

Beautiful Addison & mom's big nose!

Bat out of Hell with her walker!

Clapping with pride for putting her milk cup back in cup holder! Yay Addy!!!

We went to bed Friday feeling good about Addison's condition and hoping/praying we would get to go home Saturday. Her blood work came back showing her platelets had dropped again to 3,000. The weekend Dr. feels Addison could have something other than ITP due to her lack of response to treatment. The Dr. has scheduled a bone marrow biopsy for Monday to run tests to check for Aplastic Anemia and Leukemia. Obviously this devastated all of us. We thought she was in the clear for anything really serious but now the doctors are not convinced. Charles and I are trying to stay strong for Addison. As Charles said..this is the kind of stuff that happens on TV or to other people. We never thought it would happen to our family and our perfect baby girl. We have not spoken to the Dr yet this morning but we don't expect much change.

On a good note, Addison is in great spirits. She is such a trooper. She enjoys running up and down the hallways, going on wagon rides, watching the planes/helicopter take off and land and playing in the playroom. We have let her watch movies (Blue's Clues is her favorite) and I think she might be addicted to TV now. We are still reading plenty though so we aren't too worried. She still gives every nurse/Dr that walks by a death look. She does not trust any of them since everyone in scrubs tends to poke and stick her. It really is quite funny. She is a pro at giving a scowl!

We will continue to keep everyone updated and again we thank everyone for the prayers, love and support you have shown us. Pray for a miracle!

Not Where We Want to Be

As most everyone knows Addison had to be admitted to the hospital Monday night. We took her to the pediatrician monday because I was concerned about red dots that were covering her body and severe bruising that seemed to show up with no real trauma causing them. Her socks and diaper were causing her to bruise. The pediatrician did some blood work b/c she suspected it was ITP. We received the blood results Monday evening around 7:30 saying her platelets were around 6,000 and a normal person should have a platelet count around 150,000-200,000. This was critically low and we had to take her to the All Children's Hospital in St. Pete immediately. By the time she was admitted and they took her blood again it had dropped to 2,000. They started her on IV IG that night around midnight. Tuesday her platelets were 1,000. She received the max dosage of IV IG which is once per day for 3 days. It is a tedious process. It takes 4 hours to administer via IV and for the 1st hour they have to check vitals (temp, blood pressure, pulse) every 15 minutes then every hour. Addison absolutely HATES having the blood pressure cuff on. Needless to say the 1st night was extremely long! Her platelets on Wed were back to 2,000. The dr was hoping for closer to 10,000 so they started a steriod treatment as well. Addy's platelets were only at 4,000 by Thursday so they did a bone marrow aspiration to make sure there was nothing else going on. Charles and I were very upset that this had to be done. Getting to the bone marrow can be very painful and it is hard watching your child go through this. We were in the procedure room with Addison and they gave her a sedative and pain reliever. It was not nearly as bad as I thought it would be. Addison was hilarious on the drugs! She was singing, dancing, yelling Da-Da and flopping all around. It took 4 nurses to hold our strong little baby girl down then they gave her extra drugs because the 1st dose didn't seem like enough! Thank God the results came back from that normal so we don't have to worry about any other possible problems. It is definitely ITP. Thankfully ITP is not a life long problem that Addison will have to live with. Once her body rejuvenates her platelet count she should never have to go through this again. Research believes ITP is brought on by having a virus and as the body works to fight off the virus it also develops antibodies against your platelets which causes your body to destroy platelets as soon as your marrow produces them. This morning her platelet count was at 6,000 so the Dr believes she is on the up swing it is just taking Addison a little longer than she would like. We are keeping our fingers crossed for a 10,000 or better count tomorrow so we can finally go home. I must say this hospital is absolutely WONDERFUL! They have been so great to us and making sure Addison is as comfortable as she can be. They have a great playroom and a girl who comes around to do music therapy with the children. We are on the hemotology/oncology floor and we are so blessed that ITP is all we have to deal with in comparison to some of these other children.

I will post a slideshow so you can see her enjoying her stay! We also want to thank everyone for their tremedous support, love and most of all prayers. This has been a very difficult experience for us and we truly appreciate everyone. We couldn't have made it through without you! We love you all.

Visiting Addison's Great's!

Charles, Addison, Tootsie and I set off on an 11 hour road trip to Tennessee to visit Charles's grandparents...Addison's Great Grandparents! The road trip up was not wonderful but the weekend made up for that. Addison loved being with Mama Jo, Daddy John, Cousin Richard and Aunt Merc. Their house is located on one of the prettiest pieces of property I have ever been to. Their back yard butts up to a beautiful lake and there are trees and flowers everywhere. Charles spent every summer as a young boy in TN and he has the most wonderful memories from there...we want the same for Addison but I don't think I can give her up for the whole summer! :)

I just can't even explain how much fun Addison had up there. She felt right at home. Went right to bed and slept great all night every night. She didn't nap very well Saturday but I think that was because she had too many things to explore...there was no time for sleep. Aunt Merc has a new puppy, Beau, a handsome yellow lab who adored Addison and she loved him too. Tootsie on the other hand had NO patience for Beau's puppy behavior. She was much too busy hunting chipmunks and squirls!

We left TN Sunday morning in hopes to miss the Memorial Day traffic and have Monday to get back on track. Addison did great the car ride home! We bought a DVD player and got a holder in TN for it. She watched two Blue's Clues slept a few hours and only cried about an hour out of the 11 hour drive! When we stopped for lunch she ate two whole chicken nuggets...drenched in ranch of course! That is Addison's new favorite thing, dipping everything in ranch! Hey, if it gets her to eat meat so be it! She can have a bottle of ranch!!! :)

Anyway it was a wonderful Memorial Day weekend. Hope everyone else had a great time!