Day 73-Clinic Vent

Ella had clinic today. I lost another part of my patience today. It took 3 hours to find out today that her counts were too low and we were sent home till Friday. I totally understand the fact that her counts were low, but I don't understand why: only 1 oncology nurse was on duty when we got there, it took 2.5hrs to get her blood tests back, we sat in a waiting area for an hour and a half that was packed with patients and their parents.
Maybe I'm just too new to this, but it seems like a less than efficient system to call us into the clinic area to have her weight, height , and blood pressure taken, go into the clinic to be accessed, go back out to the waiting area because they are so busy that they are out of rooms, go back in to be seen by the Dr., go back out to the waiting area to wait for her test results, then go back in again when they get the results- or have a room available for you.  Today just didn't go smoothly. She complained of pain as soon as her port was accessed- and said if continued to hurt afterwards. She has never complained before- so I stood up for her and said it has to be "something" because she hasn't complained about pain after like this before. Nurse 1 agreed, and nurse 2 said she must just be stressed and letting off steam. Nurse 2 was called in because they were so busy.
Then we were sent back out to the waiting area that was completely packed. Jan and I sat on top of this little bookcase/bench because there were no seats. The oncology area shares a waiting area with the regular non cancer peds area and their waiting area was filled so the regular patients and their kids were sitting in the peds area. I watched this mom sit there and cough into the air and it was hard for me to not smack her! There is one little sign that says that this area is for oncology, but I don't think half the parents see it- and it's in English which isn't every patients first language. Also, the 1 bathroom in the area is on the oncology side- so every kid, sick or healthy, and every parent, sick or healthy, has to go through the area to go to the bathroom. They also have the entrance for another peds area at the end of the waiting area that patience leave and enter through, so they are also walking through the oncology area. This seems so counter productive to me! To me a separate area to keep them healthy means a separate area, not one that is used by everyone.

After we sat there for a while, one of the nurses from the "Regular" area that took Ella's vitals when we got there said that she just went to pick up Ella's meds so she would be called back shortly. Half an hour went by and Ella was still complaining of pain by her port, so I went back and told the regular nurse to tell the oncology nurse and they called us back. This is when they told us her counts were too low for treatment. Which means that they never got her meds, because they are not ordered from the pharmacy until the blood work comes back. AHRG!!! The doctor came in to tell us her counts were low and I asked him how safe it was for her to be sitting out there all this time, with every kids of patient, with her whites so low? Then I suggested that they get another sign so everyone can read it.  He also gave me a script to take Ella to our local hospital during this phase to have her blood work done the day before so we don't have to drive out there and sit while waiting for her test results. I can't tell you how stressful it is for Ella to sit there and wait for treatment. She knows its coming and that we are just...waiting. She heard the nurses voice that usually accesses her port today and she started crying . She was sitting on my lap and she grabbed my arm so she could wrap it around her more tightly. It just seems like there should be a better way. there isn't anything to keep her distracted during the waiting process. We bought her a Nintendo DS, but that only worked for 30 minutes.
So now, we go back on Friday to check her counts. It means we keep her away from germie places this week, and try to keep her safe.
Thanks for letting me vent. Please feel free to share your hospitals procedure with me if you are at a different one. I like the people, just not the process.

Happy birthday to my awesome hubby. I love you with all my heart.

Day 71 &72

Ella is fine. It's just that I find myself alone in the house, which is such a rarity, that I realize I'm sitting here thinking. Sometimes maybe it is easier to just keep moving forward and not stop and think.

The kids are playing with one of my closest friends, who just completed her chemo this summer. They were so excited to spend the night they were packing at 6:45am yesterday and had bags of luggage for their overnight trip, which she lovingly packed in her trunk and her front seat. Smiles on all 3 of them as they pulled away yesterday.

I found out this week that my biological father has cancer and is in treatment right now. This is a man that I have only met once. I stopped being sad for myself that I didn't know him years ago after I finally met him. It was weird, because when I met him, I stopped being sad for the things that I thought I missed, and became sad for him and the things that he missed- and is missing out on now. I am not going to claim to know him, but from our brief meeting in 2000, it seemed to me that fear was the thing keeping him from knowing me, and now my family. And we are a damn cool family!

So today, I am praying for Dave. I pray that he believes in our Savior, that he has peace in his life, that his body will be healed, and maybe his heart.

~Blessing-Katie

Day 70

Just another ordinary day!
As I typed the number 70, I had to say "Wow 70 days". In some respects it seems like a big number and others so small. As I read the trials of other parents with ALL children, I am reminded on a daily basis that we are the lucky ones. She is so happy and has so much energy. Right now she is singing and dancing behind me and I am wondering how I am going to get this kid to fall asleep in the next 15 minutes so I can get some stuff done! She has been singing everything lately. Making up words for every activity she is doing. Right now I told her I would snuggle in a minute so she is singing about stickers and snuggling.

Today Ella and I used a fabric bone that had blood cells in it and a DR. kit so we could explain to her Build-A-Bears how her blood was sick. She really got into it and preformed the 2nd exam on her kitty all by herself. We went over ever step of what happens when she is in the clinic- and then with the bone explained why. She even accessed their "magic medicine buttons" and put a band aid on them when she was done. It made me feel better to know that she has a better understanding of why we are going through all of this.

Have a good weekend everyone. It's Steve's birthday so Josh and Ella are going to hang out with Aunt Carrie and Steve and I get to go on a date. I'll post again after the weekend unless something comes up.

Blessings~Katie

Day 69

Ella and Pickles (Sara)

Nothing new to report. Ella had a fun day of playing with her Pickles all morning. Sara comes a few times a week to play with Ella while I work and clean. She is my sanity saver and Ella's fun saver! I try to play, but in the end, I'm still mom. So Sara saves the day! Here they are with all of Ella's barrettes in their hair and googly eyes on their faces. Sara has so much love in her heart for kids, and I am so grateful God gave her that gift.

Ella with 5 eyes

Have a good one.
Blessings~Katie

Day 68- I'm okay until someone asks me if I'm okay

Beautiful Rainbow from this morning.

Ella is at rock star status. She is moody, but she is a girl, otherwise she is doing great. We got to go to lunch with a dear friend today and we played and worked on schoolwork together- yep, just another boring day. We are so lucky!

Everyone asks if I'm okay. As long as they only ask once, I'm fine. But, if they ask twice and say "No, are you OKAY?" then, I'm not okay anymore. For a split second I actually thing about what our family is going through and I have to choke back the tears. I guess I'm as okay as I am going to be. I have started pretending a little that nothing is wrong with Ella. That she is just a normal 4 year old girl, who happens to have Cancer. This pretending in my head helps me make it through the day. I'm fine until something slaps me in the face- like the 2 inch scar across her chest where her port was inserted. I kiss it every time I get her dressed for the day. Today, it was the waitress at Applebees. She informed us as we were leaving that they are supporting the Make A Wish Foundation and she told us about a little girl with ALL that wants to go to Disney. I think we both welled up with tears a little. Today this was my little slap of reality.

I believe there is something worth its wait in gold at the end of that Rainbow, and its a beautiful promise.

Blessings~Katie

Day 67

Nothing to report, just a normal boring day here at the Van Gheem's today......YEA!!!

I got in trouble with my own Dr. for not taking care of myself yesterday- no surprises there. He said I needed to drink less caffeine and avoid stress to lower my blood pressure.....ha! He wants me to try on my own for a year before he gives me anything for it. He may as well give me the pills now!

Have a good night. I pray for many more boring posts!
Blessings~Katie

Day 66

Josh- Ninja, Ella-Princess, Steve and Katie- Black Eyed Peas

Ella has had a ton of energy.  She makes me tired just trying to keep up with her. She walked about a mile on Halloween to go Trick or Treating, then spent 3 hours playing with her friends. She is doing so well. We do not need to go back to clinic till next Monday. She goes every 10 days for this round with increasing doses.

Today after Ella put a headband in her hair she went over to her mirror to look at it. She said, "Mommy, why is my hair missing here?".  She looks every day and hasn't noticed until now. So I just told her it was wet, and when it dried it would spread out. Then told her she looked absolutely beautiful. She smiled and went on with her day. If she was an adult she would have questioned it and been consumed with it for the day- Kids are so trusting!

Blessings~Katie

P.S. Her hair wasn't wet.