Speechless

I am in total awe at the outpouring of "gifts" for our family during this Christmas season. It is amazing to me the love of neighbors, family and total strangers. I know each act of charity is a blessing from my Heavenly Father in answer to mine or someone else's prayer. Thank you!

The Longest Dr. Apt.

I don't know about you, but every time I use to go to the Dr. office I would read the sign that goes something like: "a charge will be given for any missed apt" and then be very irritated. I was on time for my appointment, but I waited an hour for the doctor. Is it okay now for me to charge them because they "missed" their appointment? That's how I think it should work anyway. (One time they did actually give me a $10 gift card for a restaurant because they were so slow.)

I use to think that 2 hours at the doctors office was a super long time. (It is, right?) Today was our first outpatient doctors visit. Just the driving time alone would beat my two hour limit, so I knew I was in for it. It started at 8 am and we left the hospital at 1:30! (I know I should just be grateful about the word "left") The doctors visit went like this:

• check in and get weighed, measured, blood pressure (Crap, Odette has lost weight again!)
  
• sit in the room (Screaming from poor Odette who hasn't been able to eat for the past 12 hours and puked all day yesterday.)
  
• have a nurse draw blood and wait for lab results (She actually is good in everything except a little low in the red blood cell department.)
  
• doctor comes and looks at Odette (Her ears are finally not red! "If she is still puking with the anti-medics don't give them to her, she is a baby so expect puke." Mom is mad.)
  
• go down to RTU for spinal chemo and a bone marrow aspirate--wait a half hour for Odette to wake up from the anesthesia
  
• try to get Odette to eat/drink something so we can leave RTU (One swallow works, right?)
  
• go back up to clinic and get her "regular" chemo
• have doctor explain the new maintenance chemo routine and order prescriptions (Should have done this earlier, but like a regular doctor office was running late and we needed to get down to the RTU.)
  
• wait an hour and a half to mix the chemo prescriptions, get our chemo schedule for the month and schedule our next visit--not for 4 weeks!! :)
• go brag to the inpatient nurses that we are going home
• get our prescriptions by paying an arm and leg! (Only $70--I thought it would be at least twice that!)

Now that is a long doctor visit...I don't even want to imagine what it will be like getting chemo and a blood transfusion...probably we would get a fever and be stuck in the hospital for a week, so no need to worry.

I am so excited that I get to be home and take care of my children and attempt to have a clean house so that Odette doesn't get sick with any fevers! We get to have the holidays at home. I couldn't have picked a better gift for myself!

Snow Day

Today was the first day that there was actually enough snow out that the kids could attempt to play in it. They were all very excited to get all bundled up to go out. Brandt and Kathleen went sledding for a while, but then decided they were going to start piling snow up so eventually there would be enough snow in the pile to make a fort.
Odette had been watching Josselyn slide down the little ramp in the back yard that the big kids and Ken made for her, but just kept on screaming and pointing out. I figured that her counts were up and a couple of minutes wouldn't hurt her, so I bundled her up and took her out.
The little girls thought it was great and even Ken must have been having a nice time because he was smiling--even showing his teeth! Odette was even brave enough that we put her on the sled and let her go down. She was a little bit more slippery than the sled and ended up off of it. She was smiling and squealing still. Not until we went in the house and she was mad did she end up puking. Oh well, I think it was all worth it!
The kids can hardly wait until the next time that there is a big snow storm and mom decides its worth all the struggle of getting warm clothes on again! I am sure there will be plenty more days like this to look forward too!

Lemonade

"When life gives you lemons, make lemonade." I am sure that you have all probably heard this saying. It seems easy enough if you are given lemons (a few at a time) to make lemonade, but right now, I feel like I am being pelted with lemons from every direction! ("When it rains, it pours!") I don't even have a second to put a glove on to catch them so I can even attempt to make a drink!! Even when I do manage to make lemonade, it is SO VERY SOUR!!

At least I think it is going to be sour, and then I start drinking and realize it isn't so bad because of the bits of sugar added to it from you...a phone call to say you are thinking about my family, a kiss from a crazy 3 year old, a smile, an offer to run errands and knowing you are all praying for my family's wild and crazy life...then I know that my lemonade has been sweetened to exactly what I need. Thank you for helping me not be so burdened down that I can't make it through another day.

Pink

"Mom, I am adorable in pink makeup." This is what Josselyn informed me of as she looked at herself in the "show me the beast" mirror. Obviously her favorite color is pink, Kathleen should hide her makeup and I shouldn't go and flush Odette's feeding tube without taking Josselyn with me! She is adorable though!

GI Test

Today Odette made a trip up to the hospital and actually came home in a two hour time frame! I have to admit that I was really worried that we would end up admitted because that is always how it has worked out.

Today Odette had an upper GI test done to see if they could find anything to explain her puking constantly, even though she hasn't had any chemo for three weeks now. She had to drink some dye, and much to my amazement, she drank it right out of the cup. When the doctor said that was enough, I took it away from her and she through a huge fit. I guess that we need all her food to taste as yucky as I am sure that dye stuff tasted! Anything that looks like chalk can't be that good. They won't know for sure the results until next week, but it didn't look like anything was out of the ordinary. I don't want anything wrong, obviously, but it sure would be nice to know how to slow or stop the barf.

Christmas Tree

What better way to celebrate that the family will be home together for the holidays than to decorate the Christmas tree. Each year we usually go and pick a real tree because I love the smell. Of course, we are never able to afford a real tall one, so we joke about having a "Charlie Brown" tree. They are never taller than I am! This year a real tree is out of the question because of all the "junk" it has on it would put Odette at great risk. I have a great friend that knew this and called to tell me that she had our tree for us. It consisted of 2 1/2 yards of green butcher paper and numerous sparkly papers for the kids to make decorations. So, no Charlie Brown tree, we have the tallest tree we have ever had...almost goes all the way to our vaulted ceiling!
The kids all enjoyed cutting and pasting the decorations for the tree. Odette rolled all over attempting to get the tree and eat the ornaments. She was successful a couple of times to make it to the tree! (Yeah, this means she is trying to crawl!) Josselyn loves trying to reach the star on top- with the help of her daddy. Brandt and Kathleen of course enjoyed doing something crafty that didn't involve just crayons and paper. (This is all they have been able to use without mom home for supervision.)
The kids had so much fun making our tree this year that the comment was made, "We should do this every year!" It was tons of fun and a lot cheaper I am sure than buying a real tree, but I am sure it is just as messy as a real tree! (Garbage pick up should be easy though since it will fit in a garbage bag!!)
I am so thankful to so many of you who realize the little things in life that make such a big difference to my children and go out of your way to help them be able to experience life in a fun, new way! May your Christmas be Merry and Bright!!

Maintenance

We finally made it! I never thought that I would live to see the day that we were onto the maintenance part of Odette's chemotherapy. The days and nights past have been so very, very long, but with all the faith, love and prayers everyone has offered in our behalf, we have survived the past six months! I have never done and hope never to have to again go through something so very hard.

Odette, and family, still have a long road ahead. We will be going in on the 14th of December for a spinal tap and to get our teaching about the chemo we will be doing at home. We should have seven weeks of being at home before we go back into the hospital for a couple of weeks of high doses of chemo. (As long as we don't get fevers in the mean time.) Then the process is repeated over again. (Right now 10 days of amoxicillin doesn't seem so bad!) This will continue until we reach week 49 and then we do the final evaluation to make sure that all this worked.

Being at home is going to be great for the family. Having a baby have cancer has had many challenges go with it. It has been really hard on the entire family. Hopefully being at home all together, we will be able to get into a routine and Odette will be able to have continuity and learn. I was sad that I wasn't enjoying Odette as a baby and praying for her to grow up because that meant we would be out of this mess. However, it looks that I still get her as a baby because she is about at the same level as when we started chemo. I still get to teach her to crawl, walk and eat-without puke I hope! The nicest thing is that she still loves to cuddle like a baby...lots of days this is my best medicine.

Hooray for Odette being such a great fighter! She has beaten the odds and proven that she has a very strong spirit to share with many!

Transfusions

Once again, Odette was in need of a platelet transfusion. Her count was at 7 (normal is 150 to 400) and she was getting random bruises appearing, not to mention that ones that were where she got her nupogen shot or rolled over her feeding tube. So today while getting the transfusion, I realized that I have ever explained how transfusions of blood products works. Remember that this is just my understanding. I am sure that stuff is a little different than how I explain things.

Before you can even order blood products, you need to first now how much the patient weighs (7.4 kilos-this hasn't changed since we were admitted) and her blood type (O positive). Then the doctor will figure out the amount she needs and order from the blood bank. Once we get it at the hospital, the nurses have to do some double checking to make sure it is the right type and okay and then we can start the infusion. It is always good to double check that you are giving a patient the right stuff-kind of like measure twice, cut once!

Odette is hooked up with her central line for the infusion. For platelets, they are sticky so they are run in quickly, over about a half an hour. Red blood cells are run in over a longer period of time, about two hours, because its a lot of liquid for the body to absorb. During any transfusion, vitals need to be taken frequently to make sure that the body is not having an adverse reaction to the new materials being put into the body. Vitals consist of temperature, oxygen level, heart rate and blood pressure.

It is a simple procedure, but a very vital one. Most people can donate blood, but you can't choose whom the blood goes to. You can donate at any blood donation bank and it only takes a couple of minutes and it can be done frequently. You can also donate platelets, but I am told that it takes a couple of hours to do this. I am so thankful that so many people care enough to take the time out of their busy schedules to donate, especially since Ken and I do not have blood that the banks want! Thanks for helping save Odettes' life in a way that we can't! Keep donating so we can continue to transfuse!!

Family Time

A few months ago, my sister Katie decided to take her chances and come to have Thanksgiving with our family. She new that life is very unpredictable at our house, but was willing to come anyway. Unfortunately, Odette was in the hospital the entire time she was here to visit, which also meant that I was gone, so Katie ended up being our babysitter. It worked out great to have her here to be with the kids. I am so grateful that I have such a great family that goes out of their way to make sure Ken and I have everything that we need and then some and love us unconditionally.
When Ken was with Odette on Saturday, the kids, Katie and I had some "family" time. (I can hardly wait until our family time includes everyone!) We went to see the lights on Temple Square, or as Josselyn kept calling it- "The temple of squares". It was fun to look at the lights especially since it wasn't too cold yet. The favorite was the lights on the fountain and the pink lights. (Who ever would have guessed that the pink ones would be the favorite!)
I think Josselyn's favorite part was riding on the trax train. It was difficult for her to stand and wait for it to come and once it finally got there, she was running to get on and when it was time to get off, you can probably guess, it wasn't the funnest thing for anyone!
We also went and saw the 3D Christmas carol. The kids thought that the glasses were really cool. Josselyn wore hers for all of 10 minutes and then would put them back on every time it would start to snow. The movie wasn't all that great, but being with the kids was lots of fun.