Wednesday, March 30, 2011

Updates and the CureSearch walk!!

A note to readers: The following is a long post...if you don't have time to read the whole thing, or are only interested in info about the CureSearch walk...please feel free to scroll down to the bottom of this post for that info. Thank you!!

Once again its been almost a month since I last posted and a lot has happened.  March proved to be much like February...lots of sickness and low counts.

First got sick again and had to stay the night in the hospital. Bleh. You had woken up the night before screaming that your ear hurt so we gave you some Oxycodone and it didn't even touch the pain. You are NOT a wimp so I was pretty worried. I called the Clinic and they said I could just take you to see your regular pediatrician because you didn't have a fever. I called and made an appointment, and right before we were supposed to go you spiked a fever of 102 degrees so we ended up at clinic anyway.

Once we were there we followed the usual fever protocol (iv fluids, iv rocephin (antibiotic), blood draw for CBC and cultures, vrp (screening for viruses), and wait for counts). We were all ready to go except counts and were actually packing up to go when the nurse came running back and said, "Wait! Her ANC is only 100!! Your going to have to be admitted." What?? Your ANC had been 2300  exactly one week before so I was stunned to say the least. Not only that but your Hct and Hmg were hovering just above transfusion levels. Ugh. So we scrambled. It was a Thursday night...I had left Tucker with Angie and was worried he would be freaking  out wanting to nurse and I was now stuck at the hospital. Luckily Grammy De Soto was in town and so was with us at clinic and was able to take our van and pick him up. Dad came and spent the night with you and I got the day shift.

The night you spent in the hospital you got your first (and hopefully last) neupogen shot. Its supposed to help you boost your counts. The docs didn't really want you to have to stay for 48 hours because they felt like they knew what was making you sick, and because you didn't seem to be getting worse so they thought the shot would help them get you home faster. Regular protocol calls for at least 48 hours inpatient AFTER a fever goes away. So...we were all hoping your fever would stay away and your counts would come up because Carly's baptism was Saturday.

Your fever DID stay away, but the 2 neupogen shots only brought your ANC up from 100 to 200. Double Bleh... Luckily Dr. Lemmons was the doc over ICS that day cause he said we could go home anyway...we would just have to give you IV Fortaz (antibiotic)every 8 hrs around the clock, and stop all oral chemo till your counts came up. I was fine with that cause your counts always seem to bounce right back up after such things....I was wrong. It took 10 days to get your counts up!

 I am so glad we could give you the Fortaz at home because 10 days in the hospital would have been rough...but its exhausting having to wake up in the middle of the night to give it to you. I would have to wake up at 3am to get it out of the fridge so it could warm up to room temp. (if I didn't do this you would have a major cough attack every time the cold medicine hit your chest through your port), then get up at 5am to give it to you, and then hang out for 20 minutes while it ran through, then unhook you and flush your line. We also had to give it to you at 1pm and  then at 9pm.

Sleepy Wee Mee getting her IV Fortaz.
I feel guilty complaining about this because we have so many cancer friends who have been inpatient a lot longer than us...but I was really struggling at the time. Two months of cabin fever and sick kids, plus daddy's been gone a lot with his new calling so I was feeling trapped and overwhelmed and exhausted to say the least!

I was so glad we were able to come home. You were so worried you were going to miss Carly's baptism... I told you we would reschedule if you couldn't come, but was so glad we didn't have to because Grandparents De Soto had come all the way from Nebraska for the special day. All is well that ends well I guess, and Carly's baptism was beautiful and so was she. It was such a fun and special day. I was so glad I could be there with ALL my family to enjoy it.
You've been blessed with good big sisters. They love you.

I think we are all feeling much better now though, especially you. I was so relieved when you started feeling better and actually wanted to play and have some fun with your friends and toys. It was a major stress relief for me to say the least. Id been worried about you for a long time. You just hadn't been yourself for awhile.
This is how you spent a good majority of your time for several weeks.

You got to stop Fortaz and start chemo 2 days before your regular clinic apt on Thursday (St Patricks Day) and were so cute at clinic. You really opened up and joked with the nurses and doctors. You kept saying, "oh man...there's no one to pinch...everyone has green on!" in the funniest voices while making silly faces. There was only one person who we could find that didn't have green on, and as luck would have it, it was YOUR doc. Dr Fluchel totally forgot to wear green so you giggled and pinched away. I bet that was a good feeling...not many kids get to pinch their oncologist! (I guess not many kids HAVE an Oncologist!!) We were in and out pretty quick and Nurse Carrie said she'd call us with counts.

We were on our way home when she called and said your ANC had dropped again to only 600. That's 600 BEFORE all the chemo you had just gotten and BEFORE all the chemo you were supposed to take that night. (Clinic Thursday is a big chemo day. You get: IV Vincristine, you start your 4 steroid pills  twice per day, you take 5 Methotrexate pills, and you take your usual 6mp pill.) The nurse said that the doc wanted you to continue your normal chemo schedule and they would recheck counts with home health in two weeks. Usually they would check again after only 1 week, but the steroid you were taking for 5 days gives you a false high ANC number. So they come tomorrow to check your levels and I'm anxious to get the results. I really hope you counts are up...I'm nervous they wont be and we'll have to reduce your chemo dose. I don't like that. I hated the 10 days when you couldn't take it. It was hard knowing your immune  system was down and you weren't taking anything to suppress those cancer cells. I never thought Id WANT one of my kids to take chemo.

 Not knowing what all that oral chemo would do to further drop your ANC I just decided to treat you like you were neutropenic to just play it safe. Anything under 500 is considered extremely high risk for infection and its just not worth it to me. So, no church, and no store, and no crowds...including family. The only exception was Carly's baptism, and we made you wear a mask. I don't think you mind too much would much rather play at Ry's house than run to the store with me. Even I would rather play at Ry's then go to the store!

Life seems to be returning to normal... and we definitely like normal. You have been jumping on the tramp, playing with Ry, riding Deuce, spending over at grammys, and even got to go to tumbling! It was fun to see you go. You were so excited. You had missed almost a month with sickness and low counts and were so glad to be back. You had definitely lost a lot of strength though, but worked so hard anyway. I could tell you were exhausted after the floor exercises which was only the first 15 minutes of class! You have tumbling tomorrow and are so excited. You told me earlier, "I'm gonna work so hard at tumbling and pass off one of my tricks! You're gonna be so proud of me, mom."  I love how you enjoy every moment you are feeling well and just soak it up. I'm so grateful for your example that way. Here I sit complaining about giving you IV antibiotics... when you are the one who actually has to TAKE them. Perspective is something I'm still learning... and I'm grateful to get glimpses of the world through yours.

You love to ride Deucey! You always say, "Look mom,
Im riding him all by myself!"
Only a couple of other things to report.

One: Our family got to be pioneers!! Bro. Humphrey's in our ward is over all the Church Welfare. Well, they are building a new Welfare building that's over 500,000 square feet in SLC, and Bro Humphrey's wanted artwork in the foyer/visitor entry way to depict actual welfare in action. Well, there are not many paintings of that topic, and the Church is very picky about what hangs in their buildings. Long story short he got approval from the First Presidency to get a photographer to take photos depicting welfare scenes from actual church history! Namely the rescue of the Willie and Martin handcart company's! Well the photographer is none other than Mark Mabry (he has a couple books out called "Reflections of Christ" that are amazing photographs that depict events from Christ life)! I LOVE his books so I was so excited when we were picked to participate.

Not only were we picked to participate, but we got to keep all the costumes in our house so the whole cast could come try on, and pick out costumes. It was so fun watching you and your sisters try on pioneer dresses with pantaloons and bonnets. You all were so cute! It was also fun having so many others come, and get their costumes picked out. We met so many nice people. It was so neat to help organize just that small part of the project. We spent the 2 weeks prior to the shoot getting costumes ready, and studying up on the individual stories from the handcart companies. I was so amazed and impressed at the faith these pioneers had to walk 1,300 or more miles to get to their Zion. Pulling all they had in a handcart. Little did they know they would be caught in early snowstorms and have to cross frigid rivers and streams during blizzards!

The photo shoot was in the mountains above Huntsville and the location was beautiful. We sat in the snow with our handcarts and our freezing kids while the photographer snapped pictures. Some of the children were actually crying from the cold and I was fighting back tears as I thought of all the mothers whose children were literally starving and freezing to death and there was nothing they could do. I cant even imagine that. What a hopeless feeling they must have had, and yet they remained faithful (and grateful) for the gospel in their lives. I couldn't help but ask myself if I could have been so faithful. Id like to think so. Hopefully I'll never have to find out. I do know one thing...the Lord does bless you in the midst of your trials. I have felt closer to Him more in this past year than ever before, and I know its through our trials that He refines us and humbles us and helps us grow.

and Two: Tom Hagerman called (your wish granter) from Make a Wish and said they are going to deliver your playhouse on April 9th!! Woo Hoo!! (Only 10 days left!) We are all SO EXCITED to see it for the first time we cant hardly stand it. Tom said when its delivered it still wont be quite done. He said they have to have someone come and paint the inside, and that they are even going to furnish it!! I didn't know for sure about that part, but you are so excited! He also said that once its 100% completed they are going to throw you a celebration party to celebrate the completion of your wish! You have been so excited to have all your friends and family come and see your "Make a Wish" you keep asking me how much longer. It really couldn't be better the time they get it all completed it will be warmer weather and you can really enjoy it! Yay for Make a Wish! What a wonderful organization...we are so blessed.

I'm so grateful for how well you have endured the last year, and every day. You truly are an inspiration to me and you have definitely earned a special wish!

The Following is for all of McKall's fans who read her blog. This means you!!  I have finally, and officially set up my website for the CureSearch cancer walk. PLEASE PLEASE PLEASE come and walk with us on July 9th and help raise awareness, and support for such a worthy cause as children's cancer!

Never in a million years did I ever think I would hear the words, "Your child has cancer." It was devastating and I cry at the thought that every day in the U.S. 35 children are diagnosed with cancer, and 7 of those children will not survive. We have been so blessed that McKall has done so well with her treatment, but did you know that 3 out of 5 children who DO survive cancer suffer devastating long-term side effects! There is only one thing we can do to be proactive...Research! Research helps us come closer to a cure. In the past 20 years research has brought the cure rate up from 30% to 80%!! Every single dollar is a dollar closer to a cure. McKall is proof that research is the key to finding a cure! (I'll get off my soap box now...)

I have chosen to support CureSearch because it is a foundation close to my heart. They fund the very research McKall has been participating in this past year, and I would LOVE to pay it forward. Some of our cancer friends have already benefited from new findings from this very research!!

All you have to do is log onto McKall's site and sign up. Its only $10 to register for anyone 16 and up and kids 15 and under are free! If you cant walk but want to donate, please do...every dollar helps! Please help us fund research for a cure...Cancer stinks! Lets help put an end to it!

THANK YOU- THANK YOU- THANK YOU to everyone who has helped support our family this past year! We have been truly blessed to be surrounded by so many wonderful people!

PS-Look for some upcoming events planned to help us raise funds for this cause...I'll keep you posted.

Wednesday, March 2, 2011

Is it Spring yet???

I really cant believe its been almost a month since I last posted! I wont say I'll miss February...cause I wont. We had a lot of sickness at our house...

It started with Carly. On the 13th she woke up with a fever. The fever lasted 6 days. Poor Carly missed an entire week of school. She was miserable, and I hate that every time someone in our family gets sick I worry about you too. I never know how your body will react to sickness of any kind. Its always a worry that you could have to stay in the hospital and get really sick.

Next it was Tucker. He had already been fussy the whole week Carly was sick, but I didn't take him in to the doctor until Saturday morning when he woke up with both his eyes crusted shut, and I knew he had pink eye. Turns out he also had a major ear infection in one ear too. Poor wonder he was fussy. I just thought it was cause he was teething.

The next day it was my turn. I woke up Sunday feeling pretty crappy. I had a fever and body aches. That lasted through Tuesday. Wednesday I felt better.

Wednesday you got sick. I could tell by the look in your eyes you were miserable. Luckily your temp hovered right around 99.8 to 100 even so we didn't have to take you in that day. Thursday you woke up with a fever of 101.1 though so we headed down to clinic for fluids, antibiotics, and blood cultures. The fever routine. I sometimes wonder if I'm abnormal because I really wasn't worried about your counts. The nurse (Mindy-one of my her) looked at me like I was crazy when I asked if we could go home now that your fluids and antibiotics were done. She said, "Uhhh...we haven't gotten her counts back yet." Oops...oh yeah. You had been there the week before and your counts were good so I just assumed they would still be good. I was right too...your counts were awesome! The doc and nurse both seemed shocked. I guess there have been a lot of kids getting admitted with RSV and Influenza A and B. Luckily all your cultures, and the virus scan came back negative. In fact your fever lasted the rest of that day and then didn't come back. I was stunned! I thought after Carly and I had both had a fever for several days that you would too. Nope...once again your amazing little body fought off whatever was making it sick super fast. How do you do that?? You'd think the immuno-suppressed cancer kid would get sick first and have it the longest...not my WeeMee! Your amazing.

About the same time you got "it", so did dad. He had it for a few days too. So far everyone in our family except Alyssa has had it. Hope were done with it...

Ive been a little worried about you the last several days though. You have had yucky horrible diarrhea since before you got sick last week, and lately you complain a lot of weak legs. You don't wanna walk anywhere up or down stairs. Even from your room to the couch is asking a lot. You also fell asleep today at 10:30 in the morning and I woke you at noon so we could take lunch to dad. You have dark circles under your eyes and have lost a little weight. All this has me nervous. I'm glad you haven't had a fever, but at the same time, if you did, I would take you in and you'd have to get all checked out. Its times like these I miss our weekly visits to the clinic. As nice as it is to go every four can be nerve racking that we go so long in between check ups. You temps have stayed in the 99's so far so we'll just wait and see what happens. I hate waiting and seeing...

In other news...Carly is getting baptized on Saturday! We are all excited. Its such a special experience to see your little ones all dressed in white and looking beautiful and glowing as you get baptized and then receive the Holy Ghost. Thank heaven for the gift of the Comforter! I could never have made it through this last year without it. We are so blessed to know our Heavenly Fathers plan for us, and be able to take an active role in our own salvation. We get to choose for ourselves who we want to be, and I am so pleased with the choices all my kids are making. I have been so blessed with wonderful kids!

In related news...Daddy was just called to be the Bishop of our ward! What a huge change for our family to have him away so much, but what a huge blessing to have the opportunity to give back to the ward who has loved and supported us so much this past year. We have been so blessed to live among so many wonderful people. I feel like I will be forever in their debt, and this might be an opportunity to give back...just a little. It'll be interesting to see how our life unfolds over the next 5 years or so while daddy serves. I hope you always cherish the opportunity to have the priesthood in your home...I'm so grateful for your daddy, and I know you are too!

Clinic in February was on the 17th (during the week Carly was sick). You had a back poke scheduled this round so you had to go hungry so you could have an empty stomach for anesthesia. I had to stay home with sick kids so daddy took you. He said you did awesome! You got a back poke...which is when they take spinal fluid out of your spine and replace it with the exact same amount of chemo. The reason they do this is because the chemo you take orally, and through IV will not penetrate the blood-brain barrier so they give you chemo in your spinal fluid every 3 months to make sure your brain stays free of cancer. He said you woke up from anesthesia really well, and that they had already given you your Vincristine so you were able to go right home. You had the usual side effects... Leg pain (severe enough you ask for "the pink stuff"(oxycodone) NEVER ask for medicine), fatigue, belly aches, pale skin and dark circles under your eyes. The leg pain is the worst. You cry out in pain and whimper when you walk. You are so brave and tough and you always try to keep going no matter how crappy you feel. How'd you get so tough?

Clinic has tried really hard to make flu season safe for all. They don't allow any siblings in, and they have really done a great job of getting us in and out. They are so amazing!

I'm so glad we are dealing with this cancer now, and not 30 years ago! 30 years ago a child with your same diagnosis would not have made it. I'm so grateful to all those kids who came before us, and paved the way, through research and study to get us to where we are today! What an amazing leap to go from almost no chance of survival to 95% !

On a side note...TO THE READERS OF McKALLS BLOG: Coming up on July 9th there is a very special cancer walk to benefit CureSearch. CureSearch funds the Children's Oncology Group(COG), and 95% of all the money raised goes directly to fund Children's Cancer Research. McKall is participating in the COG research study at Primary Children's Hospital right now, and the study is already benefiting cancer kids across the country! We really want to give back so I will be organizing a team and trying to raise funds for the group. Once I get my website up I will share more details. I am SO excited about this!! Its groups like this that have raised childhood cancer survival rates to what they are now...and wouldn't it be great to help support an actual CURE!

In other news...your hair! Holy cow...I know I say this every month, but its growing like crazy! Ill let the pictures do the talking.

Not a big fan of the flash...Hair pictures for March!

Side shot...

And from the rear...its a little crazy from laying on the couch.
Cant believe its long enough to get messy!
A little note about a little hat: I ordered an owl hat like this one (see below) back in November and it never came. Long story short the person I ordered it from took my money and kept the hat. Our sweet friend Angie took it upon herself to find one like it and order it for us. She gave it to you a few weeks ago and you don't leave home without it! I love it so much and so do you. It  has been a neat conversation piece. We cant go anywhere without someone stopping us to ask about it. In fact you wore it to clinic last time and all the nurses were making a big fuss. Then when I had to take you back for your fever one of the nurses (Tiffany) came back and showed us an owl hat she was making like it! It has been fun to listen to you tell people about it and see the smile it puts on yours and others faces. I know its "just a hat", but its a special hat...
LOVE this hat...Thanks Angie!!