Sunday, March 30, 2014

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!



Friday, March 7, 2014

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


Friday, February 28, 2014

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!


Friday, February 14, 2014

Week of Rest


Well, I am one week shy of the half way mark for this stage of my chemo treatment. It hasn't been fun, but it hasn't been awful either!! No fevers yet for me. No in-patient stays. No quarantine. Phew! My hair is starting to fall out again and my mohawk came back. Mom isn't too fond of it and gave me another buzz cut. Here I am sporting my 'hawk.


This week there is no chemo planned. No home meds. Just cuddles and naps and time at home. The doctors and nurses call it my Week of Rest!


When I'm feeling well enough to play, I like to do my reading and coloring.



Sometimes my big sister lets me help her with her math homework.





I just started playing with stickers, too.






My sister let me play with her dollies this week. Like typical two-year olds, my imagination is starting to bloom.





My taste buds haven't changed too much yet, as pizza is still my favorite food. I have stopped drinking milk, so that's been a bit of a challenge for Mom and Dad who are trying to keep me hydrated. I have started watching a little TV in my down time and my favorite show is Sesame Street.

I'm going to have a quiet Valentine's day. Here's wishing you and yours lots of kisses and cuddles. I've been getting loads of them lately. Happy Valentine's Day!



May God bless you all, especially those of you on journeys similar to mine. In the spirit of the Olympics, I know we can make it to the finish line.

Keep that fire of hope burning!

Thursday, February 6, 2014

Things to watch for; I'd much rather watch for signs of spring...

Hi Family and Friends!!



I just returned from the Oncology clinic and carefully carried Katherine still in her snowsuit, hats and gloves up to her bed to rest.

Thankfully the cold didn’t wake her, and she is still sleeping.


 Here's a quick heads up about this next week, as it was told to me by our nurse practitioner at Katherine's appointment in the HOT Clinic today.


Katherine will again begin another week of steroid medication. This medication is intended to wipe out herimmune system.


She was at an ANC (absolute neutrophil count = how strong her immune system is) of 2000 something last week, this week she was at 700, and we expect it to go down much further this week.


You may recall they kept us in the hospital the last time she was on steroids, because then too, her counts  were very low, in the 200s and 300s…


Katherine had a trying week last week with constipation, which kept her from sleeping, then diarrhea, which was heralded, as it signaled the end of constipation, but it was a pain to manage. Then there was the nausea and vomiting. She remained in good spirits, mostly.



She now has had another dose
of the chemo that may in time be detrimental to her heart muscle, and another
dose of the chemo which may cause mobility issues and will immediately bring
back the constipation.



We have to be very careful
with Katherine this week. Lots of hand washing. No exposure to ill people or
coughing people. Removing shoes at the door, washing door knobs, telephones and
refrigerator handles. Washing floors and toys and dishes right away. Watching
what she plays with, is it possibly dirty? Washing her hands often too.
Making sure she isn’t putting toys in her mouth or our spoons or dirty anything
in her mouth.



We must watch for her
coloring to remain constant, as her bone marrow is getting wiped out and she’ll
likely continue to lose blood and platelets and will possibly need a transfusion of those next week. Her counts this week are already on a significant downward trend. We should watch for an increase in bruising. She is also not making good blood
cells at this time, as her marrow is suppressed, and we need to watch her for
looking less than normal pink color, white lipped, or extra fatigued, as that
means our little vampire may need more blood products, too.  


(Looks like my birthday blood drive is going to be helpful to other kids in this situation this summer. Blood donors - you're the BEST! Please continue to watch for details on this and put June 4, 2014 on your calendar. Location and times TBD!)


She currently has two mouth sores, which are expected as another side effect of one of the medications she is taking; we have to watch her eating and intake. If she starts refusing to eat or drink, it may because she has throat sores or soft mucosal tissue sores, and likely we’ll need to get her hospitalized for dehydration and nutrition.


She has not been drinking fantastically, according to her BUN and creatinine lab stats, that’s kidney stuff.  I think she’s been drinking great, but we really need to push her
apple sauce intake and all liquids to save those precious little kidneys.



We have to check her for fevers a lot this week, as any fever is a sign that her body is fighting something off, she just doesn’t have any cells left to fight. So we’d need to
go to the hospital immediately. We get triaged right in and will likely be admitted
for days.


There is a lot going on with Katherine. She's a little aware that she doesn't feel well, but overall she's our smiling sunshine. She stopped waking up with a smile, which has us all a little disheartened, but we know it's in there.


Thanks for your continued support and prayers.


God Bless you all!


Here's Miss Smiley playing with the chemo scanner.









Here's our happy nurse giving Katherine the chemo that will ultimately make this cancer go away! Thank you!!









Yes, she's still wearing her Christmas jammies!! If the weather is going to stay so cold, we are not giving up our footed pajamas any time soon.


                                                       And from our local weather authority,
                                             "Bundle up everybody! Keep yourselves healthy!"