Daddy day

Clinic appointments on Mondays mean one thing:

DADDY DAY!

My mom had to work today, and Dad was able to take me in to
the clinic, which he doesn't get to do that often.  He was a little worried about making sure we
did everything right, but I told him not to worry.  I’m a pro at this.  When we checked in, the nurse behind the
counter said she needed to give me my wrist band, I held up my right arm
because that’s the side I like it on.  Then
we sat down to wait for the nurses to call us back.  When they wanted to check how much I weighed,
I went and stepped up on the scale all by myself.

When they wanted to see how tall I was, I went right to the
counter and asked the nurse to pick me up. 
I like them to check while I’m lying down on the counter.  When they wanted to put the blood pressure
cuff around my arm and give me an “arm hug”, I pointed to my left arm because
that’s where I like them to do that one. 
I also held up a finger on my right hand so they could put the pulse-ox glowing
red thing on it.

Then we went to my exam room to wait.  I wanted to play on their computer, but it
was too high.

So I got some reading done instead.

The port access went very smoothly, and I had to get some
fluids in to keep my kidneys healthy.  I
think Dad was feeling nervous, so I played peek-a-boo with him to keep him
relaxed.

Thankfully, it was a pretty easy day for me, and Dad handled
it really well, too. I got some chemotherapy in the clinic and don't have to come back until next week. After my chemo, we both
were happy to head home.

As for me, I was pooped, and slept the whole ride home. 

Taking care of Dad is a lot of work.

Hurry up and wait.

Have you ever done that? Hurry up and wait? You push push push to get out of the house on time, and you may have even been running a little late, and when you get there, there's a line of other folks waiting. Aarg! What do you do during that wait? Tap your foot? Make repeated eye contact with the person at the door to the entrance? Huff? My mom and I decided to pray. It was mostly my idea.

Today, I got to clinic and my pre-op check went well. I passed with flying colors. I've been really happy and healthy these past 3 weeks while we waited for my counts to recover. We got a green light for surgery. Then we waited for the OR. I had another spinal tap scheduled for today. Another brain washing. Rinsing down my cerebral spinal fluid with chemo, since my other chemos don't cross the blood brain barrier. Well, there was a delay in the OR and we had to wait.

First, we did some coloring.




Then, we read some books. Here I am making a scary face.






Then we got our escort to the surgery floor and we waited for the prep with the surgery nurse, then the anesthesiologist, then the surgeon. Mom and I had to do a lot of waiting. I hadn't eaten since yesterday in preparation for surgery so I was a bit hungry. And, waiting time overlapped with a little bit of my nap time. Admittedly, I was overtired and hungry and two years old. But, in our weakest moments that's when we need God the most and there's no call-waiting on that line! We just dialed and got right in.





Dear God, Please bless the kid and the family who had complications the the OR today. Help them heal and be well.



Dear God, Please bless the surgeons, doctors, nurses and all the staff at Children's Hospital of Wisconsin. They work so hard to do your work, to make us kids get better from things like cancer, heart disease, organ failure, diabetes and a myriad of other diseases. Thank you for educating them and giving them such big hearts.



Dear God, I've got one more request and one more thank you. Please make it so my surgery goes off today without a hitch. And, thank you for giving my mom and dad such wonderful friends and family. They need support even more than I do, at times, and it's so nice that you have given them so many good people in their lives to help them get in better touch with you and what's really important. Their words of encouragement have made this easier on Mom and Dad. I can tell. Thanks for having their back and for putting angels on earth.

Shortly after that, our surgery nurse came and took a picture of me and Mom. She wanted me to wear that ridiculous surgery hat. Get real.









And before I knew it, I was in the surgery suite. Mom got a chance to eat. Then, I was out of surgery, ready for a snuggle and on my way home.








Thank you, Prayer Warriors. Thanks for your prayers for me and for my family. God's line is always open. Dial in whenever you like. You can ask for stuff, thank him for His son, ask for forgiveness or strength or for patience... Whatever you need. Now, He doesn't always give you EXACTLY what you ask for, but He's listening and the lines are open right now... Give it a try. And thanks again for your prayers for me. "I feel good."

Location:Deer Run,Delavan,United States

Delayed Intensificiation

My next phase of chemotherapy was supposed to start on Thursday, but my counts were still too low to qualify for treatment. My immune system took quite a hit during the Delayed Intensification phase, and my bone marrow is still trying to recover. I even had some home nurses come to the house to administer chemotherapy four days in a row, two weeks back to back. I guess that's a good thing, that the meds this last phase really did a good job of killing all the immature cancer cells. They killed some of my good and healthy blood cells too and I needed a blood transfusion. But, that's pretty common with Leukemia. That's why my mom is hosting a blood drive in June. She's going to collect blood for me and kids like me, and grown ups too, undergoing cancer treatments.



Yep, so it's just taking a little longer than my doctors thought for my bone marrow to repopulate. I can't start the new meds until I'm strong enough to handle them.



So in the meantime, I just wait. I wait inside my house because I can't risk catching something in the grocery store or at church. But soon, maybe this summer, I'll be able to go out in public a little more. Plus, cold and flu season is almost over, and spring is almost here in Wisconsin.

Here are a few pictures from my trips to the clinic and things I've been doing the last few weeks to keep busy.

My home nurse.

Riding a toy airplane while waiting for my blood transfusion.

Playing with my dolly in my hospital crib.

The blood, tubes and clock during my transfusion. THANK YOU BLOOD DONORS!

At home, snuggling with my big brother. 

Helping my big brother with his homework.

Blow drying my head (my hair is on holiday.)

Me

Reading my favorite book with ELMO!

I'm learning to eat with a spoon all by myself!

Pajama party with my brother and sister. 

Getting ready to go to Children's Hospital.

This one needs a caption, any ideas? 

I'm learning to blow bubbles with my speech therapist. 

Bedtime storytime!

Playing dress up.

I love stealing my mommy's earmuffs and wearing them in the house. 

Smiling pretty in my horsey shirt and overalls. 

Mommy and Daddy found a princess castle and I partied in it all day March 21, 2014. World Down Syndrome Day!

I feel good.

I feel good. - James Brown

Things may change by the end of this week, but I'm still hanging in there. My counts are on the way down, which is what my doctors wanted. I may even need a blood transfusion, but as long as I stay my playful and joyous self, I might not need blood products. The nurses come to my house again this weekend, to give me chemo four days in a row. Then I earn another two weeks of rest. Mom and Dad are hoping I can avoid another fever and 4 day hospital stay as next weekend comes. I'm hoping for that too. But honestly and truthfully and from the top to bottom of my being... I feel good.

This week at clinic I sat all by myself like a big girl while the nursing staff took my vitals. I never did that before.








I read a book while I got IV fluids and chemo.









I came home and took some selfies while wearing a new hat. I'm not sure who sent it. Mom says the packaging said it was from China. Thank you anonymous donor.






































Thank you to all anonymous blood donors too. Giving of yourself is such a generous gift. There are kids each day, like me, who can make it another day to play and sing and jump and trap themselves in the bathroom so well that their Moms have to call 911, just because of you. Yes, that last part is true... I kind of did trap myself in the restroom last night. A big shout out to the nice officers who came to our house to help me break free. Luckily, they didn't have to cut the door down. Daddy was able tell me how to get out of there and I was able to follow his directions. Poor mom was a bit hysterical.










I hope you have a good day. I plan to have a good day, too



- Posted using BlogPress from my iPhone

1000 words

If a picture is worth a thousand words, my oh my, have we been verbose.

My week of rest turned into a weekend at the hospital because of a simple fever. No real infection, thankfully. Then, my counts were too low to stay on my treatment course, so I got a second week of rest, and boy did that feel great. Two weeks in a row: no chemo!!

Well, I'm back at it and so far so good. I know I said it before but this Delayed Intensification phase is intense! My doctors are even sending a nurse to my house for home chemo 3 days a week, in addition to my spinal tap, in-clinic treatments and oral daily anti cancer meds.

My hair fell ALLLLL the way out now and my head is shiny. I don't much mind, and don't much wear hats unless I go out, in which case my mom makes me wear two hats!

My counts are going to go real low again soon. The doctors are just cleaning the slate so that when my bone marrow grows back, it grows back cancer free.

Chemo changed my tastebuds. Now I love broccoli!!!






All bundled up before surgery.



I was not too happy about having to skip breakfast and lunch before my spinal tap this week.


I got over it, though. Cheerios to the rescue.


Chemo this week was so intense they had to give me a 4 hour IV afterward to protect my kidneys. Here I am in the HOT Clinic coloring and keeping myself busy.







Home again and enjoying the love I get from J and D!




Sometimes my mom dresses me funny.




They kept my port accessed, which means there is still a needle stuck in me so my home nurse can get me the meds I need. I'm not always happy.





But usually I am.






Enough already with the photos, Mom, Geez!





Have a great week. Stay warm and well. God Bless you!