You continued to feel great all the way up to your first Maintenance treatment. You were feeling good, but I could hardly get you to eat. I was actually looking forward to you taking the steroids, just so you would eat something!
|You and Ry pretending your at the top of the "wishing tower"! |
So excited to make a wish!
|Still sleepy, but ready to go to clinic!|
Or so we thought at first, by the time you got home you were obviously sick. You had the droopy "sick eyes" and when dad carried you in he said, "McKall needs her mommy, shes sick." As soon as I saw you I was worried. Dad sat you in my lap and I could feel the heat radiating off your little body! You complained your legs and back hurt, and that you had a headache. Dad took your temp and it was a whopping 104 degrees! We called the clinic and they said to bring you right down and they would get the anitbiotics and fluids ordered. You were so upset! Its so hard to be reassuring when your so scared and dont know what to expect. Plus the fact that your sick and feel so miserable makes you just want to be at home. I told you your counts were good so you wouldnt have to spend the night. That turned out to be a promise I couldnt keep.
They were quick in clinic, and got you all plugged in and hooked up to the meds asap. When doc Fluchel came in he said he thought there was a pretty good chance you could have a bacterial infection (SCARY) and that he wanted to watch you close while they gave you the antibiotics. He said the fact that the fever came on so fast made him think she could have had some bacteria sitting somewhere in your central line, and when they flushed your port it released all that bacteria into your system and caused you to get sick. I was worried it was from lack of hygeine on our part, but the doc said that it wasnt. That it was probably just some bacteria naturally found in your body and that there was nothing we could have done differently...thank heaven!
He said some common signs that it is bacterial is that your blood pressure drops and breathing becomes a little labored while getting the antibiotics. Sure enough, not 10 minutes later, all the things they were watching for started to happen. Your blood pressure dropped and they started measuring your breathing. It was kind of scary to watch you. You were asleep, luckily, and werent awake to see the worry in my eyes. They gave you more fluids to help with your blood pressure and then the doc came back in. He said he felt like you should probably spend the night. He said that if you had a good night, and they could get your fever down, and as long as you were feeling better and the blood cultures didnt grow anything that he would feel good about letting you go home the following morning. Thanksgiving morning. I said I hoped so...that would be definitely something to be thankful for.
They moved us up to a room in ICS and we got you settled watching a movie. You were exhausted so I headed home with Tucker to save grandma from the new puppy and your sisters. I HATE HATE HATE leaving you there. Even though dads there, I hate it. To make matters worse you were in tears...wanting me to stay with you. Its the pits. Long story short, you had a pretty good night. Your fever came back around 2am and then didnt come back after that. Your blood cultures came back negative, and your counts were good so they said we could bring you home.
|Feeling much better the next day!|
|Cutest turkey pumpkin ever! Dont know if you can notice, |
but his beak is over on the side by the butter dish! :)
|We did some crafts...|
|...and read some books...|
|...and ate! (cant believe I forgot to take a pic of the food!)|
We all went around the table and shared what we were thankful for. It is so overwhelming to think of all the amazing blessings weve received this year. Although its been a rough year watching you fight cancer, its been so amazing watching you (and your sisters) gain a testimony of the Priesthood, and feeling the comfort of the Spirit during countless blessings and prayers. We are so grateful for all the wonderful and amazing people who have supported our whole family during this time. Those that helped watch your sisters, those that helped with fundraising, the many many people who came out and donated blood to show support for you, and help others at the same time. Im most grateful for the testimony I have gained that the Savior really does make us strong enough to deal with the trials we are faced with. I cant believe how many times Ive felt like I couldnt stand one more sleepless night, only to wake up the next morning with only two hours of sleep, and feel totally rested. Or how, amazingly, every time you had to stay overnight in the hospital it happened to be at a time when daddy was home. Over a weekend or a holiday, or in between jobs. OR, the times I thought I was failing, and not being a good mommy to everyone, and not getting all that I needed to done...Id get a reassuring card in the mail from someone, or an email. I KNOW those are not just coincidences. I know those are blessings from our Heavenly Father and I am grateful. So grateful.
Unfortunately it hasnt been all smooth sailing. You have had a major adjustment period. I think that after not having chemo for 3+ weeks, and feeling so good, that taking chemo again has hit you like a ton of bricks. You came home from the hospital with HORRIBLE diarhea (poor kiddo) that lasted for several days. Which always happens when you get the IV antibiotics. Plus your legs were very weak and tired. You didnt want to do any stairs, and just walking from one end of the house to the other was exhausting. The docs told us to delay your oral chemo 2 days so you could recover from your fever a bit first, but when you started it just intensified the yuckiness you were already feeling. I think you got used to feeling crappy from the chemo so you learned how to pace yourself. Then, when you felt so good between DI and Maintenance you just went full speed all the time. So, when you were feeling crappy again, you had to re-learn all of that.
Your amazing though. Here it is, one week after your fever and treatment, and you are doing awesome. You finished the steroid and have an appetite again. I think I'll be glad that you have to take the steroid for 5 days a month because at least Ill know you'll eat well at least 1 week out of the month! Your new Maintenance chemo schedule is as follows: Everyday you have to take 6mp. In addition the first 5 days of the month you take steroids, and every Thursday (that you dont get a back poke) you take MTX. Then on the first day of each month you get Vincristine through your port at clinic, and every 3 months you get MTX in your spine(back poke). And as always, Septra on Mon and Tues. I say once a month, but its actually a 4 week cycle. So every 4 weeks we start the regimen over. So far your feeling good and taking your medicine well so Maintenance isnt looking too bad.
This last Tuesday was a very special day. We got to use your Make a Wish key at the Wishing Place in Salt Lake. We had no idea what you were going to wish for before you went, and we were so excited to find out. It was an amazing experience. Ill explain with pictures.
|We got there a bit early, so we hung out in the car for a few minutes |
so they could finish getting ready. You were nervous.
|Just inside the entry way was this huge star..it says, "Welcome to |
a Wishing Place McKall!" How cool is that!!
|Each one of these glass stars represents a Wish kid, and their |
wish that was granted. You'll have one too!
|Once you decided on a wish, they wrote it down and had you |
put it in this medal cylinder.
|Then you took your wish to the top of the Wishing Tower. You|
cant tell from this picture, but there is pink light shinning
out the small windows in the door, and under it.
(your favorite color)
|Then we all went in...the room was changing color and |
playing pretty music. We all got to share what our wish
for you was... (things like health, happiness, and
a trip to DisneyLand were all shared!)
|Then they told you to follow the lights on the floor to deliver|
your wish to the "Wish Wizard".
|The lights lead you to this cone hanging in the wall behind|
the water fall. There was a hole inside where you
put your wish in.
|Then you follow the light back around and put your wish on |
top of this....after you did all the lights went crazy and the
music started playing and they said "I think the Wish Wizard
got your wish, do you?" You were in total awe.
|The snack was smore's...your favorite! You even got to bring some |
of teh leftover chocolate home!
Two small side notes I forgot to mention. One: we got a puppy. I think hes gonna be a really good dog...once hes potty trained! and Two: Your hair is growing back SO FAST. Here are some pics...
|We named him Copper...hes a sweety.|
|Taken a week ago...look at all that fuzz!|
|The pic doesnt do it justice, but there is a ton more!!|
Oops...one more thing I forgot to mention...what you wished for! You wanted a Barbie house with and elevator, and a playhouse. So, rather than make you choose, they are going to present you with a Barbie house (with and elevator) at your Star Raising party, and then have some people come build you a playhouse in our backyard in the spring!! So exciting! Later this month we will have a Star Raising party where ALL your friends and family can come and watch you write your name on a star that they will raise with all the other stars. I cant tell you how impressed we are with our wonderful wish granters: Tom and Leslie! Amazing!