January 24, 2012

What a great week thus far! Whewwwww, so glad!

It started this past weekend when Kass felt great, she had great energy and just looked good!  She'd had a rough past week with finals and stress, but during the weekend was able to catch up with some school work she needed to finish for missing school from her surgery.

Monday, came with a little bit of anxiety since we had a follow up appointment with our local oncologist.  Last time we met with him was last July, right after we came back from Houston.  He really did not agree with the antineoplaston treatment we chose for Kassidy, but he respected our right to choose the treatment we believe is right for her; unlike our first oncologist here in town.  We were suppose to go see him every 3 months, but we've been so hesitant.

Anyways, the appointment went better than what I ever expected.  He was impressed with Kassidy's 20% reduction thus far, her neurological test improvement since the last time he saw her, & that she's doing well of decadron (steroid).  He commented on how good she looked many times.  This made Kass & I smile beyond belief.  He did say he would like to see her every 3 months and if we need anything to please not hesitate and call. Ok, ok we won't wait so long between appointments.

By the time we got to the car we were dancing the jiggy and smiling from ear to ear.  I'd say "mission accomplished"!  Hope that we have started to pave the way for future pediatric cancer patients.

Today was another great day, Kass was back to her first bowling match since her port/catheter surgery against Shadow Ridge HS, which we won! It's been a bit of a challenge to practice bowling since her port site has been quite sore still, so she cannot wear her backpack on her left shoulder; she's been bowling holding her backpack with her left hand.  But we found a sling backpack that did the trick today, that she can wear across her right shoulder.  Success!

Centennial HS Girls Bowling Team (Ugh she's hiding from me)

Varsity Girls ready to Bring It!

Next week is going to be eventful for the whole family.  It's Make-a-Wish week.  Centennial HS is putting on a play on Feb 2nd & 3rd at 6:00pm and Kassidy will be featured as the Make-a-Wish kid for the event and on Feb 4th is 11th Annual Run for a Wish 5krun & 1Mile Walk at Town Square which our team Kassidy's Army is proudly ranked 5th as of today.

Please come and join us for EITHER event, the play is only $10 at the door & to participate for the run $22 or walk $20.  Your participation will help Kassidy and other kids fighting life threatening illnesses.

To register for the run or walk click this link:
http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1000585&lis=1&kntae1000585=04D18E427AD344E98EF8DD70903261B9&team=4930563

We also would like to ask to keep Gage in your prayers.  His MRI is tomorrow and we are all hoping for great news.  Little Gage is the one that started antineoplaston treatment same time we did.  This baby  has been fighting off and on for a long time.  It's his turn.

http://www.carepages.com/carepages/rockshelterdeliverer

We also want  to share the great news with you about other Burzynski patients we have kept contact with:
Laura's tumor has shrunk an amazing 56%.  Check out the video!  Amazing! Way to go Laura.

http://www.hopeforlaurafund.co.uk/blog/item/interview-with-dr-burzynski-about-laura

Hannah tumor has also started shrinking and she's only been on treatment barely a month.  Check out her video.

http://teamhannah.com/blog/

January 19, 2011

MRI OF THE BRAIN AND CERVICAL SPINE - (01/17/12 compared with 11/16/11)
The follow-up study again shows multifocal enhancing lesions in the brainstem, mainly involving the medulla, as well as the upper cervical spinal cord, representing the patient's known neoplasm.  These lesions appear unchanged in size as well as intensity of enhancement when compared with the previous study.  There is stable, mild mass effect on the fourth ventricle.  No new abnormal enhancement or signal is present.  There is a stable, mild hyperintensity signal in the cerebellar region bilaterally.  It is not associated with any abnormal enhancement.  No midline shift is present.  Ventricles are unremarkable.  No hydrocephalus is identified.  The rest of the brain parenchyma does not show any abnormal enhancement or signal.

 

The rest of the cervical spine does not show any abnormal signal.

 

The following measurements are expressed in centimeters:

 

T1 SAGITTAL:  ENHANCED
1)  Medulla, anterior                       1.7 x 0.8 = 1.36
2)  Medulla, posterior                     2.7 x 0.8 = 2.16
3)  Cervical spine                           4.0 x 1.0 = 4.0
                                                                        _____
                                                                         7.52 (unchanged since previous)
                                                                                 (20% decrease since baseline)

 

IMPRESSION:
1)  There are stable, multifocal enhancing lesions in the lower brainstem and upper cervical spinal cord.
2)  No new lesion is identified.

In normal people terms: Tumor is stable!

Yes, this is good news, but I am so impatient.

Today, I was reminded by Dr. Burzynski & Dr. Acelar that we were not expected to see any reduction in the tumor for at least 4 to 6 months; as we were told in the beginning. Kassidy's tumor is slow growing it will take a longer time for the tumor to respond to the antineoplaston treatment.  Her labs are showing signs of breakdown which is great and that the tumor could be breaking down from the inside out and that's why we cannot see it just yet.  Dr. B feels that Kassidy is responding well and that we just need to have patience.

Ugh, patience a virtue I need to work on.

I was truly hoping to hear the word "reduction".  It's just so hard to see reduction, reduction, stable, stable.  I just want this tumor gone forever.  I want Kassidy to get her life back.  I cannot lie, but my disappointment was just too much yesterday.  Thank goodness for an amazing husband that comes to my rescue.  This journey without him, I don't think I could bear alone.  He reminded me also about what Dr B had said at the beginning. Patience Massiel!!!  Deep breaths....

Kass took the news great, this eased my disillusion.  She was ok with the results.  Ah this kid is my hero.  God gave me an amazing, strong, young lady.  She teaches me everyday what it is to be persevere.

Yesterday was also another demonstration that we are not in control, God is.  Thank you for the reminder, heavenly father.  I sometimes forget in my state of hysteria.

So we continue treatments and everything else that comes with it.  We just know that we have a kid that goes to school, participates in sports, drives; living life and on her road to recovery.  We wouldn't want it any other way.

Thank you all for your prayers!

January 10, 2012

What a day!!!!!!! We are all truly exhausted!!!

This morning I woke up early to get Kassidy's morning dose ready.  When I went to flush her line with saline the line made a LOUD horrifying pop and she woke with a loud "Ouch that hurt".  I immediately called the doctor and I was transferred to the infusion nurses to talk me through it.  They asked me to see if there was a blood return on the line and there was, but when I went to flush again, I only got 2 cc of saline when Kassidy winced in pain again and a weird gurgling sound from the line.  UGH!  We were told we would need to go the the ER to check catheter placement & to make sure the catheter was still intact, that I would have to take her off treatment.

So to the ER we went.  Thank goodness Summerlin Hospital PEDS was not busy, they took us right in.  Nurses & doctors were wonderful.  I didn't have to explain why we chose the treatment we did instead of regular chemo or radiation.  It kinda gets old everytime we go to the ER and try to explain what & why is Kassidy on a treatment that doctors don't really know about.  They immediately took Kass for an iodine test, where they injected iodine into her port and took a scan of chest.  It didn't take long for the radiologist to tell me that the port was not to used and she would need surgery to replace it.  NO!!!!!

Ryan came to meet us and by 11:30 we were in an OR meeting our surgeon.  He explained that by looking at Kassidy's scan he was worried that the line was in such poor shape and would snap in two when he tried to remove it, that the part that goes straight to her heart would recoil inside the vein and that he would not feel comfortable going after it.  Oh my gosh!  So he would have to have the radiologist help fish it out.  So we put trust in him and God and send our girl to surgery.

Kass before being wheeled out to the OR

While sitting in the waiting room, Kyle came over to bring us some lunch since he had been doing his workout earlier. But when he came in he came in with a limp.  Oh wow!  He proceeded to tell us that ever since he had kinda twisted his ankle on Friday he had been running different and that now the front of his foot hurt.  Well, since his podiatrist happens to have her office at Summerlin Hospital I told him he should go see if she would look at it while we waited.  She did!  Love Dr. Pollitz.  He had an x-ray and sure enough, a break.  A stress fracture in his fourth right toe.  REALLY GOD!!!  What do we need to learn again????  What have we missed????  So my poor boy leaves tomorrow with a broken foot in a boot and completely disappointed he cannot participate in his first indoor track meet on Saturday.  The positive, is that his white blood count came up to normal, but his iron is still through the roof about his new lab tests.  Doctor suggested the he should have it checked again while he's in Boise to see where it's at then.  Hopefully, he can stay away from the hematologist.  Cause we are not sure we could take much more bad news.

Kyle's new boot :(

The surgeon came out about an hour and half to two hours to let us know that Kassidy's surgery had gone well.  He didn't have any problem removing the old line.  Thank you God!  He did have to make an incision above the collar bone to be able to make sure no debris was left behind and better access.  He made another insertion site for the new catheter and inserted a new broviach port catheter which is suppose to be a little thicker and a little more durable than the Hickman she had before.

When we went to the recovery she was dazed, but smiling.  I love that about her.  She can be in the worst place, but still smiles.  We waited for her double vision, nausea, and stoned look to wear out and we brought our babies home.

The incision, the new port site, and the old port site to the right of the new one.  OUCH!!

Thank you all for your prayers and good thoughts, I truly believe they helped us today through this most crazy day of all and to keep it together. We still trust that God has guided us through this path for something that someday we will learn it's true purpose.  But tonight I just hold my babies close and hope that Kassidy and Kyle heal fast so they get on with what they suppose to do in life.

January 9, 2012

"God doesn't give you more than you can handle" Right! We sure don't feel that way sometimes.   On New Years Eve I was so excited that we had two weeks of a wonderful Christmas break.  But the first Monday of the New Year came with the craziness of the hemoglobin again.  Dr. Acelar called to let us know that Kass's hemoglobin was at a critical 6.4, but she was not really showing extreme signs.  So, we ran to a 24 Quest Diagnostics instead of the ER since we were just not up for a 7 hour visit just to retest her labs.  Her blood was taken again and in an hour we had the lab results and her hemoglobin was back up to 10.   We were so elated that we didn't have to take her to the ER for a transfusion, but we were wore out and just wanted to come home.  The emotional roller coaster is sometimes so exhausting.

Kass returned to school that week, but had to stay home the day after.  I could tell she wasn't feeling well because she knew if she missed that day she would have to miss her bowling match that day.  Her stomach was giving her troubles and she slept all day that day.  Thank goodness it only lasted a day and she was back to school the next day.

Also, during the week we had the chance to go eat a wonderful 5 course meal cooked by Chef Marc from Parma Restaurant located on Buffalo & Washington.  Nevada Childhood Cancer Foundation arranged for our whole family to eat at his restaurant.   We had a wonderful time and the meal was amazing.  Anyone looking for a good italian restaurant we suggest their caprese salad, brick oven pizza, & marsala chicken, they were all delish.  Thank you Chef Marc & Nevada Childhood Cancer.

Kassidy posing with Chef Marc 

On Friday before New Years, we had taken Kyle to get some routine labs that his college running coach asked us to do to make sure he's eating the right things since he's putting in some serious miles a week.  Well, the doctor called to speak to him since he's now 18 they would not talk to us.  He informed him that Kyle's iron levels are more than normal and his white blood count are below normal, that he would like to retest his levels again in a week before he might have to refer him to a hematologist.  WHAT!!!!!  Ryan & I were thrown for a loop.  Like I said, does God really not give you what you can handle, because at that moment our hearts sank.  Did God forget about us?  Are we even strong enough to worry about the health of another child? We called his doctor back after Kyle gave them permission to speak to us.  We also contacted some doctor friends and they told us to wait till the next battery of blood tests before we worried too much, so that's what we tried to do during this weekend.  Early Friday morning I took Kyle to get another set of blood samples at Quest, but during the weekend we tried to stay busy to forget about the crazy week.

Ryan and I decided it was time to have Kassidy redeem her Christmas gift which we had a very hard time deciding if it was the right thing to do.  She's been wanting a tattoo for the longest time, but after she got diagnosed she asked us if she could get a "Never Give Up" tattoo.  It took us a couple months to ponder the answer, but we decided that it would be a great reminder for her in the future on how to live the rest of her life.  That no matter what hurdle or problem she would come across in her future that she can press on and Never Give Up.

Kass & Chelsa in front of the Tattoo Place.  Their family friend did the tattoo & they also paid for it.

She said it felt like getting hit by a softball many times.  Being a catcher she said that was old news.

And there it is!

Kass & Jason after it was all done.

On Sunday, we also redeemed another Christmas present we had given the kids.  A ride on the Fremont Street Experience Flightline or Zipline.  Kids were a little nervous, but they had a great time.  It was a great way to end the weekend.

Before riding the elevator up to the zipline.  Looking a bit scared.

Kyle loved it & Kass glad it was over. LOL

Today, Kass had a good day.  She went to school and had a bowling match against Legacy High School, who are ranked pretty close to Centennial.  Well the first game was a nail bitter, but the Centennial girls won by 9 points.  The other two games weren't as close and Centennial won those as well.  It was great to see the girls compete so well.  Kass averaged a 158 today and she was pretty happy, since she feels her medicine backpack and bowling are starting to become one.

Tomorrow we are hoping for good news with Kyle, especially since he leaves for college on Wednesday.  We are leaving it in the hands of our Heavenly Father.  Keep us in your prayers!