Winter in Jacksonville

This morning we wanted to get the kids out of the Ronald McDonald House (they are very early risers and loud the moment their feet hit the floor). So, we decided to take them to the beach to make sandcastles with their new buckets. It was about 40 degrees when we pulled into the parking place. We walked across the street to the beach and told them they could make two sandcastles and then we ran back to the car. (Ryan took a picture he will have to upload later).

From the Mouthes of Babes

Audrey was at the proton therapy clinic...

Dr. Garcia, "What are you going to be when you grow up Audrey?" (Clearly expecting her to say she wants to be a doctor).

Audrey, "5"

Ryan was taking Nathan out for a drive and Nathan wouldn't turn around and buckle himself so Ryan was pretending to drive out of the driveway by pumping on the breaks...

Nathan, "Daddy, you can't drive with kids unbuckled!"

The Latest

Audrey still has not had chemo. Her blood counts were not high enough by Tuesday and I asked that they wait until Monday so that Audrey could enjoy her weekend with Ryan and Nathan. The doctor thought the request was strange - putting off chemo. We explained that Nathan wouldn't be able to visit Audrey in the hospital and she hadn't seen them for two weeks. Our goal here is to complete all of the radiation without any set backs. We can do chemo at home.

Ryan and Nathan fled the snow storm (left an hour or so before the snow started to fall) on Friday. Our area received around one foot of snow with a thin layer of ice on top. Nathan probably won't have school for most of the week - we have noticed that as a trend. We also heard that if they have too many more snow days spring break days will be taken away.

This weekend was rainy here in Jacksonville. We spent the morning at the Museum of Science and History and watched a planetarium show. The kids had a good time. We then went on an adventure to find a place for lunch when we realized we were close to running out of gas. Everything turned out fine. Yesterday was rainy and 71 degrees today is going to be sunny and 54, go figure.




I am still in a lot of pain from my back/leg issues. I went to the chiropractor every day last week. When I leave I feel like I am cured but by the time I get back to the Ronald McDonald House the pain has started up again. I am afraid that I will be told I need to be on bed rest until the baby comes - I can't exactly do that right now. I am looking forward to the MRI that will follow the birth and surgery to fix my problems...I hope it will be that easy.

(Happy Birthday Sara - I wish I could have been there for your party! I have your card, all written - just haven't found a place to get stamps while I am out.)

Chemo Postponed

Well, Audrey's numbers were not high enough to do chemo. Grandma Beadle, Audrey and I were deciding what to do for the weekend and we had a few plans. We spent most of the day laying around the room on Friday - as laying down is the only position that feels good for my back. When I was getting ready for the day on Saturday I had a thought - why didn't we go to Venice for the weekend? Ryan and Nathan were not coming down because we had planned on being in the hospital for Chemo and now that was cancelled. So, we jumped in the car and headed off to Venice. We weren't able to get together with any of our friends because Audrey's numbers are so low she is very vulnerable to any germs which might then translate into infection. But we were able to spend some time in the pool - it was wonderful for my back, and Audrey kicked around the pool with swimmies! (Sorry to all of my northern readers who are still bundled from the cold!)

Celebrity

As if we aren't going through enough with everything going on in our family I happened to make a bit of a celebrity of myself both at the Proton Institute and at the Ronald McDonald House (RMH). On Tuesday morning Audrey and I arrived for proton bright and early 7:15 a.m. Our nurse was running late as she was dealing with an illness of a child and coming down with something herself. They began to access Audrey's port (they do this the first working day of the week) around 8:00 a.m. It was taking awhile and they were not able to do it very easily at first. Finally the tubing was placed and I had to leave Audrey with the nurses because the pain in my back was so severe.

I have been battling a terrible back pain on and off since I was eighteen. It tends to get worse when I am pregnant. In the past couple of weeks the pain has been very intense. I have been laying down a lot which helps relieve the pain. After Audrey's tubing was in, I went and lay on the bathroom floor for a minute. Then I made myself get up because I could hear Audrey throwing a big fit; but, I was so hot I had to take off my long-sleeve shirt on the way. I went to comfort her but the nurses seemed to be doing well. I began lowering myself into the chair and never actually made it. I woke up with Audrey's anesthesiologist pressing up under my chin very hard. I was face up spread eagle on the floor with a breathing tube in my nose, an IV from my hand and six people standing over me calling me by name. I could distantly hear Audrey screaming from another room. Audrey's nurse, Gina, was helping to hook me up to all of my tubing yelling to everyone that I am 18 weeks pregnant. I asked if I had passed out. Affirmative. I asked if Audrey saw what had happened. Affirmative. I told them to bring her to me. Audrey lay on top of me hugging me as hard as she could while we both cried.

I was taken, by ambulance, to the ER. Audrey stayed with everyone at proton and Gina stayed with Audrey (even though she had planned to go home to her own sick child) while I was being taken care of. Gina called Ryan's mom (who was coming over that day anyway) who immediately left to come over. Ryan was also called and told what happened. Once I made it to the hospital I called Ryan to tell him how everything happened and to assure him I was comfortable with Audrey being cared for by the staff at Proton. After I made the call to Ryan I felt very comfortable and relaxed and took a three hour nap. Once I woke up I called my mom to tell her and Ryan's mom to check on her progress. I was waiting outside the house for a wheel chair when Ryan's mom pulled up. At the hospital I was given steroids, vicoden and cortisone - all on an empty stomach which made me run for the bushes the moment I got out of the car. I was released around 1:00 p.m. to Audrey's social worker (who had brought Audrey with her and a bag of McDonald's for Audrey to munch on) who brought me back to the RMH.

This morning I filled my prescriptions and I am feeling much better. I am still not able to keep up with Audrey but grandma is here to help with that. A few weeks ago Ryan and I decided that after I have the baby I am going to schedule an MRI and have back surgery so that these episodes do not continue throughout my life. It is so debilitating and obviously dangerous as well. It seems that word travelled quickly through both the proton family and the RMH family that we are currently part of. Everyone has been wonderful helping with Audrey and checking on my needs. Maybe the rest of our time here can be low key...

Audrey goes in tomorrow for her long chemotherapy she will be admitted on Thursday and released at some point on Sunday.

Disappointments

For everyone that keeps commenting how brave and wonderful I am, this post is mostly for you; to prove that I am definitely human and not even close to super woman.

I received a call this morning telling me that Audrey would have a 9:15 appointment for proton therapy. Great, that is even earlier than yesterday. I get a call at 9:05 with an apology that (unbeknownst to our nurse) someone else - an adult no less - was "slipped" into Audrey's 9:15 and that we should not show up until 10:00 a.m. We were already en route. I was curt but not rude to the nurse delivering the information via cell phone. Then my human side, and definitely my pregnant emotional self came though. I immediately called Ryan, burst into tears and started my rampage, "why the hell would they put an adult in Audrey's spot. She is a 22 pound two and a half year old and doesn't even show up on the children's weight scale anymore. How could they force her to go without food and put a grown adult ahead of her?" This was all accompanied by lots of tears and a very aggravated, loud voice.

After arriving to therapy I found out that there are several other children starting treatment next week. I sat there thinking, oh I am so glad we started this week because the newest children get the later time slots. As I was thinking this the newest woman, who happened to be sitting next to me, was told her appointment time for tomorrow is an hour before Audrey's. I tried my best to hide my emotions - but if you know me, my face immediately tells it all. I stood up, went to the bathroom and cried for five minutes. I was ready to call it all off and go home. I tried to settle myself down - this is good for Audrey, this therapy is so much safer than traditional radiation, an hour is not going to make her starve, etc. As I said, I wasn't able able to hide my emotions very well. Before I left I was informed that next week with the new children coming they had to rearrange the entire schedule and Audrey will, from then on, be the first appointment of the day. I was so excited I could hardly stand it. We should be completely done by no later than 9 a.m. each morning and she will be able to eat three meals a day again! - Then came the guilt...are they doing this so they don't have to put up with a cranky, emotional pregnant lady? What about the other children that have been in the program longer? I felt bad - guilty, but grateful. All I did was push for something I feel strongly about, I fought for Audrey...but the other children are going to be hungry too...but Audrey's weight is a serious issue and not all of the other children have chemo...

When Audrey and I were walking out of the office the nurse pulled a calendar with Rayna's name (the 9 month old girl I told you about in the last post) from the wall. I asked if they were going to stop the proton treatment for her indefinitely or if they were suspending it for the time being. I was informed that Rayna has been given two months to live. Again, I burst into tears. Here I am worried about Audrey waiting a few hours to eat and this little girl isn't even going to experience what it would be like to walk in this life. My heart goes out to this family. I hurt for them. I want to share with them the knowledge that I have about our Heavenly Father that loves us, and His Son, Jesus Christ, who came to this earth and experienced all that we will suffer here in this mortal existence so that we might all have eternal life. And the greatest blessing of all, our ability to live together as families after we pass through this mortal life. Yet, I know that at this point in time my knowledge won't bring them comfort because (though I know it to be true), if it were my little girl, I wouldn't care about that right now...

Jacksonville

Audrey in Ronald McDonald House

Audrey and Nathan at Jacksonville Zoo

Audrey and I arrived in Jacksonville on Sunday, January 10th. We were able to check into the Ronald McDonald House (RMH) without any problems. On Monday we ran errands as we did not have any scheduled appointments. We are situated on the third floor of the RMH - by request. It is much quieter on the 3rd floor and cooler at night (for some reason - thought heat was suppose to rise...). Anyway, the room is nice, I compare it to an economy hotel. There are two queen size beds, a hole where the closet should be (no closet system or doors) and a mini refridgerator in the bathroom. It is simple but clean and very inexpensive for us to stay here. The best part is that we are located across the street from the Nemuers Children's hospital where Audrey receives her chemotherapy and we are only five minutes drive from the Proton Therapy Institute where she receives her radiation.

In the mornings we arrive at the Proton Institute where Audrey receives her treatment. After treatment we go and hang out at the beach, sunbathing in the 80 degree weather while sipping on tropical smoothies and wetting our toes in the surf.

Okay, maybe that part isn't true - especially about the 80 degree weather. It is cold here as it is everywhere in the U.S. right now! After treatments we come back to the house and get something to eat, come to our room. I beg Audrey to let me take a nap and she pesters me until I finally give up, roll out of bed and take her out. She has increased energy from the proton treatments and I am having a hard time keeping up with her.

The hardest part of all of this is meeting the other families, hearing their stories and knowing that what they are going through is so much more difficult than anything we have ever faced. From the time we discovered Audrey's tumor we haven't asked why this has happened to us. We have taken a business standpoint, arranging doctors visits, tests, treatments, etc. Other than the original diagnosis of cancer we have had so many things in our favor. Audrey responds well to the treatment and she seems to be getting an education in the process. I will not be surprised if she chooses the medical field as a profession in the future. All but one child I have met has had a brain tumor. Many of them have not even had surgery to remove the tumor, as it is too dangerous.

We have been getting earlier time slots as the Proton Institute (which is wonderful for Audrey becuase it decreases the amount of time she is forced to fast) which means that the child's slot we are taking is not doing well. In fact, I have met the family whose time slot we are taking. They have a 9 month old daughter who has had brain surgeries from the time she was born. The top of her head has never fully developed and sinks in all along the top. She was hospitalized yesterday due to a high fever and today a chest x-ray was taken they now believe she has pnemonia. It is heart breaking.

No News is Good News

I must first comment on the fact that this little blog now has 17 followers. It is so exiting. I had to immediately check to see who decided to become a follower. Now, even if you aren't a follower I love the comments, it gives me a reason to check the blog and in turn post something new...

When you don't hear from me, it is usually good news. After Audrey's last chemo treatment we ended up coming home from the hospital a day before we anticipated. Ryan and Audrey came home from the hospital around 1 pm on Saturday. I had the fun of helping with a baby shower that was a bunch of fun - no games just food and ladies talking. It was a good time.

Today Audrey went to the clinic for our routine blood work. She has to be accessed through her port. We are given "magic" cream to numb the area so she doesn't even feel the poke. It took a couple of months before she decided that there really isn't anything to cry about - so the last three times she hasn't let out a peep and actually watches as they insert the needle. Her blood work was good although they anticipate she will need to have blood by Thursday. On Thursday we are doing an outpatient chemo treatment - vincristine - from the clinic. We will need to be there all day as she will have to be hydrated and then given blood and then hydrated again before receiving the chemo.

Because I am the only one that gets to go along with Audrey to her clinic visits I will have to tell you about the routine. When we arrive we take out the insane amount of play dough and toys that go along with it, spread them on the table. A couple of minutes she is called back. She goes in the back with the nurses as I pack up all of the toys. (Today I considered not even going back because she is such a big girl). When I make it to the back she has already stood on the scale for weight - she weighed 23 lbs today I will have to remember to keep putting her in jeans and sweatshirt! She is usually hooked up to the blood pressure cuff and pressing the button herself to get it going while simultaneously assisting the nurse in taking her temperature. The thermometers go in the ear and have plastic coverings over the end. She has discovered she is capable of and allowed to shoot the plastic cover off, after the nurse has her turn checking Audrey's temperature, she then puts on another cover and checks it again herself. When we make it back to the room where she is pricked by the needle to access her port she declares to the nurse whether or not she will be crying for the day. After she is accessed she chooses a prize - but not the typical prize box prize, she would rather choose a band aid to apply to my jeans. When she later takes it off she tells me that I should cry. It truly is amazing how quickly young children catch on to all of this. The fun doesn't even stop there. She continues examining herself when the doctors arrive - she instructs them when it is okay to check her mouth, ears and eyes with the light and then she shows them how it should be done. She clearly pronounces stethoscope and asks to use it after they clean their germs, of course. I wish you could all see it the way I do.