Wednesday, December 22, 2010

A gift of LOVE and LIFE...


This is a picture of Cami getting blood from someone.  We will never know who donated this blood, but each time she gets a transfusion I wonder who it was from and I am so grateful that they took the time and effort to give of this precious gift.  
The gift of love and life. 
Want to learn how YOU can give a gift like this one?  Read on...


This Christmas, here's two relatively simple, FREE gifts you can give that will GREATLY impact the lives of many cancer patients:

1. Get registered in the bone marrow donor registry: http://www.marrow.org/JOIN/. There are many people who need a life-saving bone marrow transplant, but who don't have a match. Last month, we heard about this sad story - an 11 year old girl with AML (leukemia), who passed away. She needed a bone marrow transplant and a perfect match couldn't be found. YOU could be someone's match. It takes about five minutes to get signed up.  Check out our friend Rachel's story.  She was able to find a donor and get a transplant.  She is doing GREAT thanks to a stranger who wanted to help in every way possible.  What a gift!!!  
Get registered and YOU could give someone hope!

2. Donate blood.  Go here to find your local Red Cross. You can donate blood or platelets at American Red Cross.  You can also donate at ARUP where Primary Children's gets their donations.
A single platelet donation can provide enough platelets for a full therapeutic dose for a patient in need. In fact, some platelet donations yield enough platelets for two or three therapeutic doses. By contrast, it takes about five whole blood donations to produce a single therapeutic dose. Many patients who need platelets are undergoing chemotherapy or organ transplant and have weakened immune systems. A platelet dose from a single donor reduces the patient’s exposure to multiple donors and is therefore preferred by many physicians.  During a platelet donation, a small portion of your blood (less than one pint at a time), is drawn from your arm and passed through a sophisticated cell-separating machine. The machine collects the platelets and safely returns the remaining blood components, along with some saline, back to you. After the donation you can resume your normal activities, avoiding heavy lifting or strenuous exercise that day.

According to the American Red Cross: every two seconds, someone in the US needs blood. Before Cami was diagnosed, I never could believe that number. I had no idea. But after going on this cancer journey with her and sitting in clinic watching her get blood transfusion after blood transfusion, that number is much more real to me. We have a friend Elena who has had multiple transfusions in just one week - and occasionally, her transfusion has been delayed because the blood bank didn't have the type of blood she needed. Or there's our cancer friend, Skyler, who has multiple platelet transfusions every day. And there's millions of other cases where people need blood. It is life-saving. And it can be really scary watching your sick child and being told that there isn't the blood they need available.

Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross
  • One donation can save the lives of up to three people.
  • The demand for blood transfusions is growing faster than donations.
  • Shortages of all blood types usually occur during the summer and winter holidays.
  • Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!)
  • It is possible to donate specifically only platelets or plasma. This process is called apherisis.
  • Donated platelets must be used within 5 days of collection - new donations are constantly needed.
  • Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks.
  • The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation.
  • The average red blood cell transfusion is approximately 3 pints.
  • A healthy donor may donate red blood cells every 56 days.
  • A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year.
You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)

Please, if you possibly can, get out and donate. 
It's truly one of the best gifts you can give.

This Christmas, GIVE LIFE!




Friday, December 17, 2010

Clinic and a blood boost 12/16-17/10

Last week Cami was absolutely THRILLED that I forgot about her spinal tap and gave her chocolate milk, but she sure knew what was coming the following week.  Every day she'd ask me "is TOMORROW the day I have to see the sleepy Doctors?", it made for a very long week.  By the time Wednesday rolled around she was so terrified she could hardly sleep.  Once again, when she needed it most, a package arrived and in it was this darling bear that comforted her through the night and through the next day.  
The timing couldn't have been better!  

Thank you to Cami's secret Santa!
Grandma Lenna also came to help out and she was a HUGE help.  It is always so nerve racking sitting outside waiting for them to finish up Cami's Lumbar Puncture.  It is so wonderful to have someone to help ease my mind until she wakes up.  Thanks Lenna!

 When we got to clinic, Ben (the dog), came to visit.  He makes the kids SO happy!  Cami's favorite thing to do is give him treats.

In the waiting room at clinic they have a hat tree that the kids can pick a hat from.  I try not to let her take one unless she REALLY loves it because we have so many at home, but she just fell in love with this care bear hat.  It is her new favorite hat and she wears it everyday with every outfit.  
Clinic went well and although Cami is still in the most intense phase of chemo she will ever get, she is doing SO well.  The first part of this phase was complete torture on us all, but the second part has been much easier on Cami and the side effects are minimal.  We are just SO grateful that Cami is feeling so much better and just in time for Christmas.

We will finish up our last week of chemo at home a few days before Christmas.  The Doctors expect Cami's levels to drop and they told us that they might not be high enough to go to family parties for Christmas, BUT Cami has shocked them with how high her ANC has been and I am hoping she will be high enough to enjoy Christmas with her cousins.  If not, we will have a cozy Christmas at home this year.

Clinic stats:
Height: 107.1
Weight: 16.8kg (37 lbs.)

ANC: 1100
WBC: 1.5
Hematocrit: 25.2%
Platelets: 199


Cami's red blood was one point away from needing a transfusion.  Her oncologist said that she would definitely be dropping with the chemo at home and  she would need to come in for a transfusion the next week.  Since next week is Christmas, I asked if we could just do it now.  They said I could bring her in the next day, so we went back to clinic again on Friday to get a blood-boost that will (hopefully) get her through the holidays.
   

Here is Cami playing with her favorite clinic toys.. the horses.


After we got Cami's vitals done, one of the nurses handed her this GIGANTIC stocking full of fun things to do.  Apparently there is an amazing engineering firm that puts together and donates these stockings for the staff to hand out to the kids around Christmas time.  I cant even begin to describe how much it helped keep Cami entertained for the 6+ hours we were sitting there getting her blood.   What an amazing company to think of these kids and donate such thoughtful stockings.  


It was a busy day at clinic and we got to see 2 of our cancer friends.  Millie was there because she had a fever so unfortunately Cami couldn't play with her.  Cute little Chase was there too, and we sat by them while he got his chemo and Cami got her blood.  Chase is 2 and they live in St. George.  I cant even begin to imagine having to deal with the terrible two's, drive from St. George to SLC weekly AND all the cancer stuff at the same time.  Dani (Chases mom) is AMAZING (plus she has a newborn to top it all off).
What a woman!  

Cami was getting extremely tired and run-down with her low red blood counts.  Her energy has increased SO SO much after getting this blood.  I am forever grateful for those that give of their healthy blood.  It means so much to these little ones.  

Monday, December 13, 2010

Clinic 12/9/10 and chemo at home...eeeek!

Remember how I said I felt like my head was going to BLOW?!?  Well, now I have really lost my mind.  For clinic last Thursday, Cami was scheduled to get a Lumbar Puncture (or spinal tap).  When she gets this procedure done, they put her to sleep...thank heavens!  This means she cant have anything to eat or drink the morning before we go in.  Well, like I said I have lost my mind and when she woke up I offered her the usual chocolate milk.  Pat caught it, but not in time to stop her from getting some into her tummy.  When we got to clinic I had to tell the Doctor that I (yes me, the "responsible" mother) had given her milk to drink, then they told us they couldn't do the LP. Cami was THRILLED, but I felt like a moron.  I just feel so spacey lately and I honestly think my mind is just giving up.  Too much to think about and plan for, so its just not going to do anything at all.  This will just not work for me though...especially because for the next 2 weeks we will be giving Cami her chemo at home and THAT is something you CAN NOT mess up on!

Clinic went well.  Pretty much the same as always except Cami started the 2nd half of Delayed intensification (in other words the crazy chemo).  She got 3 new new chemo's:


Cyclophamide (Cytoxin): This one they give her through her port.  It infuses over 60 minutes.  Side effects are; nausea/vomiting, hair loss (haha..too late), low blood counts 1 to 2 weeks after treatment, blood in the urine, metal taste in mouth, hormonal changes (nice), heart damage with high doses (which Cami did not get).

Cytarabine (or ARA-C): This is the one we will give her at home 4 days in a row for 2 weeks.  It is a 3-5 minute push.  Side effects are; nausea/vomiting/loss of appetite, diarrhea, low blood counts 1 to 3 weeks after treatment, mouth sores, hair loss, abnormal liver function, irritation to the eyes, flu- like symptoms.

Thioguanine (oral chemo): Cami will take this pill every day for for 2 weeks.  Because it is chemo, we are supposed to wear gloves or wash twice after handling.  It is a strange feeling to put gloves on just to touch something you are letting your child swallow.  The side effects are; nausea, low blood counts, mouth sores, and abnormal liver function.


On the way up to clinic, we saw our cute cancer friend Millie and her mom Amanda.  Cami was really brave because she knew that Millie had just done the same thing.  

We LOVE when Daddy gets to come!

Here's the new chemo's

Here's the oral chemo she takes every day at home.

They have PCMC all decked out for Christmas.  
Cami LOVES this Horton tree.



Cami had to stay accessed which means she had to keep the needle and tubing in her port for 4 days so we could give her the ARA-C at home.  She HATED it, but we let her access her reindeer friend and she gave him his chemo too.


she even said ok, time for your Vincristine (another type of chemo Cami gets).
It was funny and sad that she knew the correct name.  
I think the entire family could go into the medical field after this.  


I got a not so fun delivery of everything we'd be needing to give her chemo at home...



Here's what is in a Chemotherapy spill kit, in case you were wondering.  

We had to put this in our fridge...
chemo in the fridge, makes ya feel all warm and cozy doesn't it?


To give chemo at home, it is quite the process.  I clean her tubing with alcohol, flush with saline (this pushes all the medicine through her tubes and into her body), pull back for blood, a zofran push (anti nausea push) over 3-5 minutes, flush with saline, ARA-C push over 3-5 minutes, saline flush, and then we finish with heparin (a blood thinner to prevent clots).  
No wonder I've lost my mind!!!
 
I have to wear a gown, and special (extra thick) gloves to protect myself from the poison I am injecting into my baby.  



This next picture makes me sad, I had to de-access her port (or pull the needle out).  
This hurts Cami every time and I HATE it!!!

What a brave girl this Cami of ours is!  




Clinic stats:
Height: 108
Weight: 17kg (37.4 lbs.)

ANC: 1100
WBC: 3.4
Hematocrit: 32.7%
Platelets: 291

Saturday, December 11, 2010

Overwhelmed!!!

I try not to be negative on this blog.  I try really really hard, but the last couple weeks I have felt nothing but overwhelmed.  It has been really hard around here and at times it is just too much.  Sometimes I wonder how Im going to make it through the next couple of years.  Most nights I wonder how I am going to get out of bed in the morning.  It is an overwhelming feeling and I try not to look too far into the future, but I am SO looking forward to the END of Cami's pain and suffering (or chemo) that it is hard not to look forward and then, when I do, I get overwhelmed all over again.  

  The last few weeks I have felt pulled in so many different directions I feel like my head is going to BLOW!  I have been constantly stressing; about decorating for the holidays, Christmas shopping, cleaning, giving the proper attention to Caden, pill schedules, hospital visits, side effects, fevers, leg pains, nausea, and Cami even started having chest pains which had us all freaking out.  Everything has just been so darn OVERWHELMING!!!  Most days it just feels like too much to bear and I usually end up going to bed without a shower or without even looking in the mirror.  Please do not be alarmed when you come to visit and I am still in my PJ's with ratty hair and un-brushed teeth at 3PM, its really me under all that mess...I promise.  Do not be scared.

The last 2 weeks have been hard for our family, but pure torture on our poor Cami.  Watching her go through so much pain has been so hard for all of us to watch.  Things have been miserable for us all, but mostly for her.  Most of the time she just lays around the house staring off into space.  She has been in a pain/steroid/toxin/prescription daze the last 3 weeks.  



This was her favorite place to lay...and stare...and lay some more.  Occasionally yelling at one of us for more food or to quiet down because of her pounding headache 
(steroids taking effect here).  



We have been getting less and less of those adorable Cami smiles.  
You can just tell she doesn't feel good.  




coloring and writing is her escape when she is feeling yucky.  Its kinda weird though, she will just write a bunch of random letters all over a page.
It is wacky what those drugs do to a person's mind.  



Before she started this phase she had some hair growth coming in, but a few weeks after that harsh chemo hit her system and it is falling out again...


This is her new form of "brushing" her hair, well its the opposite really.  

Here's what she got...
(we went through the entire lint roller!  Now her cute little head is bald once again)










 Just when I thought I was feeling so OVERWHELMED I couldn't feel another ounce of emotion... AMAZING things start to happen and I am overwhelmed yet again, but this time I am overwhelmed with joy, love, happiness, and gratitude...  




First, a good friend, Denise sent a sweet letter into a local radio station nominating Cami (and our family) for their "Secret Santa".  Each day on their morning show they surprise one family with gifts, prizes, money, support, and hugs.  Pat answered the door and standing there was a stranger.  She handed him a phone and he was live on the radio.  Soon after, she started bringing in gifts.  I was upstairs asleep because I had been up with Cami the entire night before.  My mom called me down and I was so confused to see strangers bringing gift after gift into our home.  Stacy (the lady DJ) hugged me and explained what was happening.  I started to bawl.  We SO needed this boost.  What a way to wake up!  I cant even talk about the sweet letter Denise wrote without tearing up.  She is an amazing friend who showered us in love when we needed it most.  Thank you Denise, and thank you 97.1 ZHT for brightening our day.  It is amazing to know, see and feel how much people care!


They found out that Cami LOVES the movie Tangled (even though she has hasn't even seen it yet...silly girl) so they got her the Tangled dress, and wig (plus lots of other awesome stuff), but Cami was a little out of it and "spacing out" when they came.  Later that day, after a good nap, she opened up all her presents and wanted to get that wig on.  She didn't take it off all night!  I have never seen someone enjoy flipping hair around so much!  She was having a blast with that wig!  





Here is a copy of Denise's sweet letter to the station:
Camryn:  December 1st  

Although my true wish this year would be to cure my little 5 year old hero Camryn Carver of her cancer (along with her new friends she has met during treatment) I would be forever grateful if her, along with her family could receive some help with all of their medical bills this Christmas. This family has been through hell and back all while watching their savings dwindle while the medical bills keep coming in. Cami is in the most critial stage of her treatment and the next 2 months will be the toughest on her and her family. Let me just say that not only is Cami a loving, giving, and remarkable little girl but her entire family is the same way. When friends held a fundraisher for her back in October, her family shared the donations with others in their "cancer family" to help others in need. Please help. You can read all about her on her blog www.kissesforcami.com Thank you, God Bless, and Merry Christmas. 


***You can listen to Pat's radio clip here, just scroll down to "Camryn Dec. 1"***









Next, we get a call telling us that the Jazz Bear wants to pay Cami a visit!!!  WHAT!?!
...If anyone knows Pat they know about his deep-rooted LOVE for all things Jazz.  We were stoked, and since Cami only wants to go to the games to see this famous mascot, she was just thrilled as punch!  It was SO great to be able to remind Cami of her special visitor when she was feeling terrible, it honestly helped her to be so brave.


Here he is walking in, Cami was smiling again (after not smiling for 3 weeks) and I didnt want to take my eyes off her happy face.
It was SO incredibly wonderful to see that smile again.


He was so cute with Cami.  He gave her lots of attention and lots of Jazz swag.  
Don't worry, the bear took care of Pat too :)



Family pic-


Tony, Nat and Cute Callie got to come meet him.
Can you tell Tony is Pats brother...no resemblance right?


Cami's BFF, Elle Lee, joined in the fun too.  


Grandma Di-Di even got a Bear hug! 


What an amazing man... uhhh... I meant animal.



***They sent a camera crew and did a little interview, and made a clip of the Bears visit.  We soon found out that it would be played at some of the pre-games.  
Um, I would have actually showered had I known THAT ONE!!!***

  watch me embarrass myself here:





We have so many people reaching out to help.  
I know of 2 schools, a grocery store (Dicks in Centerville), and other fund raisers happening without us even having to ask (which is really hard to do)!  This particular fund raiser was put on by a family we don't even know!  Kayla knows Natalie (my sister-in-law) from High school.  She found out about Cami and wanted to do a boutique for her.  Natalie, Kayla, and Bonnie (Kayla's Mother-in-law) worked SO very hard on this boutique.  It was such a blast!  We took Cami over for about an hour and even though she wasn't feeling great she had a blast!  She was, once again, spoiled rotten!  Every vendor wanted her to pick out something from their booth.  She was beaming as she left with dance outfits, necklaces, face paint, and much more!  Thank you to Kayla, Bonnie, Natalie and all the vendors for participating and organizing this adorable boutique for our family.  We are FOREVER grateful!


Kayla, Cami and Nat  

Cami picking out a necklace-




My cute Grandma and mom came to support and get some Christmas shopping done.  
We had to get a 4 generation shot-



Here's Cami at home all dressed up in her new dance outfit, necklace and wings.  


When we got home from the boutique, our neighbor Dennis (who is the director of Legacy Prep Academy), brought over his choir to sing to us.  It was FREEZING, but they sang their little hearts out and it sounded so beautiful!  
Thank you for braving the cold guys!  








They brought everything including a keyboard, drums, microphone, and director!
These are the same AMAZING kids doing a fund raiser for Cami.


Thank you for making this happen Dennis, it really brightened our day!  

***Cami is getting quite famous!  This special event also made the newspaper!  
Read the article here.***




These are just the acts of kindness I got pictures of.  There has been many dinners, babysitting, phone calls, emails, texts, treats, packages and comments that have been so extremely helpful.  So, once again, I am feeling completely overwhelmed.  I KNOW it is not a coincidence that these amazing things are happening to us during our hardest time.  I am so overwhelmed with the generosity and love from others.  It has been the best of times and the worst of times all rolled into one, but as the pain fades, the memory of these wonderful moments we've had will last forever!  I know these people have been sent to help us through this hard time, it is touching and humbling to feel our Heavenly Fathers love through the service of others.  I am so truly overwhelmed by the love I have for each of you who have touched our lives forever.

including those of you who read this blog...  
Thank you for caring.  Thank you for praying.  Thank you for reading.


I am now overwhelmed with tiredness.  
night-night.
XOXOXOXOXOXO