Merry Christmas!

I am sure you can imagine Christmas here. I tried to push any thoughts of Neutropenia (as much as I could) out of my mind and think about how amazingly blessed we are to be the parents of this little girl. Our little family celebrated the birth of our savior and we played, and played, and played with all of Paxton's new toys.

Paxton in her new ball pit! Look at all that hair everywhere!

She loves her new sandbox!

Of course, Paxton was spoiled this doesn't even capture the tip of the iceberg of toys she got. :) Hope you all had an amazing Christmas.

Roller Coaster

Roller Coaster of emotions. That is me. Today we had the 2nd of our 12 tests over the 6 weeks. They pricked Pax's finger and this time she did say hurt. So that sucked. But at least it still isn't anything like taking it from her arm. I gave her a "poke" present (a fairy princess wand). She wasn't too interested :) While at the lab, they mentioned that Texas Children's requested an additional test to be run, they called it a tic count. I asked what that meant and they said it measures red blood cells being made (or something). So of course that makes me panic. Why are they doing that? I thought her red blood cells were fine? Maybe something has changed, they only gave me her ANC last time, are the other counts off too now? AGGGHHHHHHHHHH!

I waited until 3:30 and had not received a phone call from the nurse telling me the results so I called. I kept my phone by my side and somehow I still missed the darn call! UGGH! So she left a message saying the ANC is now 126. Yes, that is up. NO, it is still not even close to being good. I keep hoping that this is some sort of weird "fluke" and the ANC is going to jump up to 1500. Well we are on our 5th test in 15 days and the highest is 126. Not good.

Anyway, I call back and leave a message b/c I still want to know what this "tic count" is and what they are checking for. I get another call and the nurse (not quite as good at comforting me as the Dr. and dumbing things down) just said that is a reticulocyte count that is part of the CBC (complete blood count). I don't know. I am confused. I ask her what the total counts are (the WBC, platelets and RBC) and she says they are all within normal range. I bust out crying and say thanks and that's that.

So after Pax went down tonight, I just started crying, and praying, and crying and praying. The kind of praying where you fall to your knees and look up to the sky and beg for God to help. An emotional roller coaster.

Today...

Today I am in a funk. I think about the people who I would typically talk to often and haven't lately. Maybe they are tired of hearing me be depressed? Maybe they don't know what to say (which I do understand). It makes me look back and realize when someone I knew was going through something bad, all the things I said may not have been "the right things to say." The only right thing anyone could say to me right now is that she will be okay (and mean it). I think some of them just do not understand how scary this really is. They do not know the words that come up when you do a search for neutropenia. They do not understand that the words you see are a parent's worst fear. I wouldn't have ever known either.
It just really pisses me off that everyone goes about living their normal lives while we feel like ours is spinning out of control. Not that I expect them to do anything else. This is just me going through my emotions. I am praying constantly for God to fill me with nothing but love, hope and understanding. I actually feel guilty for the thoughts I have been feeling. I guess if I really think about it though I am full of love for my sweet family and full of hope that everything will be okay.

Texas Children's Hospital

Tuesday, December 13th was our appointment at Texas Children's in Houston with our Hematologist/ Oncologist, Dr. Mona Shah. The drive was nerve wrenching. The closer we got, the tears started flowing. The place is amazing for children. However, you could just see the sadness in all the parents eyes. There were volunteers there handing out toys in the waiting area. When we sat down they immediately came up to Pax and asked her if she picked out a toy. I just kept thinking, I cannot believe we are here and my baby is one of the patients. I am grateful for the way they treat the children, I just want every child to be healthy and never have to go through anything like this. I am not sure if I am making sense or not, but if you have ever had to take your child to a cancer treatment center, you understand what I am saying/feeling.

When we met Dr. Shah, the first thing she said was that she was seeing us as a Hematologist and not an Oncologist. She does not think Paxton has cancer. I need them to keep telling me this over and over because I keep seeing these horrible diagnoses. She said that 90% of the appointment was to see how Paxton interacted with her and us. They took more blood from Paxton but this time the pricked her finger. She didn't even flinch!! She sat there and watched them squeeze every drop of blood they needed out while eating goldfish with her other hand. I can not even stress the difference between that and them taking it out of her arm and 3 people having to hold her down. Paxton's neutrophil count came back as 0 (zero). I will post more info on all of this later but anything less than 500 is severe, 1500 is normal.

So we went through several questions and I probably left more confused. It was good to hear her rule out some of the things I had researched. I asked her again the chances of this being cancer and she said, "less than 1%. If she thought Paxton had cancer she would immediately be admitting us." We were given a prescription for lab work 2x a week over the next 6 weeks and we are to keep a journal of how she feels/her temps. From my research, this is a pretty standard place to start. They are looking to see if there is any type of cycle your body has on producing neutrophils. From what I understand, if they do not get answers this way, a bone marrow biopsy will be next.

If Paxton gets a temp of 101 or higher we still have to go to the hospital. They will do a CBC and a blood culture and then will decide if she needs an antibiotic shot or if we should be admitted and she should be hooked up to an antibiotic IV. We will be living a pretty sheltered life for now. We will not be able to attend church, go to play areas, or visit family for Christmas. We have to stay away from anyone who may be sick and just be very cautious of everything we do. I pray that it will only be for now and that one day we will back to a more normal life.

We left the hospital with feelings of sorrow for the parents that do have to make that long walk to get admitted because they are told their child does have cancer. We are still unbelievably scared and worried but grateful at the same time. Miss Paxton left the hospital with a hot pink band-aid and 3 new toys.

We have an appointment!

Pax woke up today (Monday, Dec. 11th) with a cough. In my old world that would not be a big deal. In our new world, I really do not know what to do. So, I call the pediatrician and we are told to come in. She has no fever, her lungs sound okay and everything looks okay so nothing big.

We got in touch with Texas Children's and we have an appointment tomorrow! I am scared but sop thankful that we got in so quickly. We may have phone stalked them today. I called twice, the pediatrician called, and Jud called but who cares, we are in.

Blood Results

On Monday, December 5, 2011 I took Paxton in to get some blood work. She has had several fevers with no symptoms and a few bacterial infections. All the doctors kept telling me this is all normal kids just get sick. Well the fevers scare me. Fevers with boogers-great. High fevers with no symptoms-scary! Since they were doing a routine anemia test and a lead test, I pushed for a CBC (complete blood count). No biggie, this was going to come back normal. It was just for my piece of mind.

On Wednesday Pax got another fever again, no symptoms - 102.7. On Thursday, December 8th, we got a call from our pediatrician saying that Pax's blood work came back a little off. I fell to my knees. She told us that a type of her white blood cells, the neutrophils were almost nonexistent. She said that the overall counts look okay so she does not think it is leukemia. This could be from a virus or an antibiotic but she would refer us to a Hematologist/ Oncologist for further testing. I say, "Oncologist, but that means cancer!!!" She assured me it was just a title. She asked how Pax was doing and I tell her she has a fever. So she wanted us come in the next day to check her out.

I get off the phone and panic. I call Jud and can barely speak in between sobs. He comes home right away. We were so devastated. You think you understand things and how trials in life affect people, you may even think you can imagine what people feel. Until you are told that your child may be sick, REALLY SICK, you have no idea the feeling of sorrow a parent feels. I hope most of you have never been through that or never will.

We spent the night researching Neutropenia (when the neutrophils drop below normal). Then the next day we head to the pediatrician. Paxton's fever had broke but they had us do more blood work and she said she was going to consult with a Hematologist on what to do between that point and our appointment with the specialist. So that blood test done on Friday, December 9th, came back the same Paxton's neutrophil count was severely low. The pediatrician had also talked to the Hematologist/ Oncologist and if Paxton's temp gets to 101 we are to go to the ER for an antibiotic shot or IV. She also thinks Paxton's neturopenia is chronic. Meaning she has had it a long time (months). We were to call Texas Children's first thing Monday morning to schedule an appointment and to tell them that the doctor said it was urgent.

The weekend was hell. Not knowing. Knowing what little we did know. HELL.