Need Blood!

All of Avery's counts took a huge dive! We are currently at the ER still at 1:13 a.m. Got here at 7:00 for a blood transfusion I'll update when I can. One of the side effects of the chemo's we just finished are dropped counts 1 to 2 weeks after, well....they definitely dropped!

Update: It was definitely a long night at the ER. By the time we picked up baby and got home it was after 3 in the morning on Saturday Oct. 29th. It was a process to get the transfusion started, but we are so glad for those donors who donate it for times like this. They ran her counts again before the transfusion to see where they were (even though it had only been 2 hours since we got the last results back), then they have to prepare the blood. Avery is O positive, I'm writing that here because I always forget. Because she's immune compromised they have special blood to give her that they radiate (whatever that means). They only had one on hand at the hospital so they sent for another one to be delivered in case we needed another unit of blood. She got one unit of blood over 4 hours. Her oncology said to do it over 6 hours, but the hospital in Cedar says the longest they do transfusions is over 4 hours. The oncologist was good with that. Afterwards we ran counts again.

 She's never been back into the ER (The time she had a fever someone from the infusion clinic was nice and came in just for us) since Feb. 27th the day I still remember so clearly that started all the worry and eventually lead to her being diagnosed with Leukemia. However, she still remembers having to drink a large amount of red stuff before having a cat-scan. First thing she wanted to know when we walk into one of the ER room's was, do I have to drink that red stuff again? I can't believe her memory.

When we finally got her to bed, she striped off her pajamas, throw her blankets on the floor that she had with her at the hospital and said, "Will you wash these for me"?  These blankets/pj's had been at the hospital so she didn't want to touch them anymore until they were washed.

To back track what happened before we heading to the ER. So home health didn't come on Friday until after school @ 3:00. After about 2 hours I started making calls to get her lab results, it's faster then waiting for them to call. Her results were finished about 5:30 and when I seen all her numbers so low I know we were in trouble. They were the lowest they've ever been, even when she was first diagnosed. We've only seen an ANC of 100 the day she was admitted and the next day it went up.

Her results:    Wk Before:    Normal:

WBC: .5 * ,      1.6                5.5-15.5

RBC: 1.79       2.91              3.90-5.30

HCT: 14.2 *     24.2                34-40

PLTS: 37          195              150-400

HGB: 5.1           8.2              11.5-13.5

ANC: 100 *      1500           1500-8500

Obviously all of them are low, but the * is values that are critical. I called the on-call oncologist to see what she wanted us to do. With her HCT and HGB that low she said she was surprised she even wanted to get out of bed. She had been tired, but didn't seem anymore tired then usual and had actually wanted to go with Johnny and Kelsi looking for deer so I could get a few hours of work in. I had no idea her counts were that low and she had went to school with an ANC of 100 that is super neutropenic.

This isn't so bad Pizza for dinner, a cell phone and Uncle Kyle came stayed for hours!

 She finally fell asleep at midnight! Looks like I need some sleep too!

When we left the hospital early yesterday morning her HCT went up to 23.8 (still border line) and HGB went up to 8. Home health came today to check her counts again. Her platelets dropped to 15, HCT went up to 25 and ANC went up to 500. The on-call oncologist is going to talk to her Doctor tomorrow and see what she wants to do. She may need another transfusion for platelets! With platelets that low it's scary if she did anything to start bleeding. Platelets clot your blood and 15 is super low!  Bummer for Halloween! Stupid cancer-sorry not very nice, but right now that's how I feel! We'll have to see what tomorrow brings!

ON A HAPPIER NOTE:

For red ribbon week-say no to drugs last week they had a crazy hair day! This is what someone with no hair does! Becky did a great job! She was worried about what she would do with no hair and I know it's hard for her to face everyone with no hair, but she was thrilled with this.

Also on the same day Miss Iron County came to visit Avery! She was so excited! She brought all the kids a Halloween basket and gave Avery a pillow and blanket. That was so nice and thoughtful of her! She also went to visit the other cancer kids in Iron County. We're grateful she took time out of her busy schedule to come visit and put a smile on Avery's face! These kids deserve something to look forward to. They have to deal with so many scary things. She is having to grow up way too fast!

Goodbye Phase 4!!

We are finished with her 8 rounds of chemo in 11 days! Overall, she handled it pretty well. She throw up a few times and had head ache, but so much better then the previous weeks on steroids. We once again feel like we have our little girl back. She was pumped to be able to go out and stay in the trailer over the deer hunt. We had chemo everyday over the weekend so we had to make trips back to town. I now can add nurse to my resume as I administered chemo to her one day and I couldn't have done it without my faithful assistant (Johnny, of course) helping me.  He had me add that, but really it's the truth he does a great job giving Avery her medicine too and qualifies as my nurse in training-soon he may be able to add that to his resume! (ha-ha)

We were glad the weather was warm so she was able to go outside and play. Mostly she  prefers to be inside watching movies or doing a craft project.  One of the nurses at oncology called to give me her counts from her blood draw. The nurse wondered if she had been more tired lately because her Hematocrit (HCT)  was low and was border line a blood transfusion at 24.2. Normal is 34 to 40. This is made up of red blood cells which carry oxygen to all the organs and tissues of the body. I was surprised because for her "new normal" she seemed like she was moving around more and had more energy then the last few weeks when on steroids. We finished her last chemo through her port on Monday, Oct 24th and the oral pill on Friday. If she seems more tired then usual then the nurse wants me to call. If not Home Health will come check her counts again on Friday. One of the side effects of this chemo is dropped counts 1 to 2 week later. Her other counts were:

WBC: 1.6,(low) HCT: 24.2 (low) ANC: 1500 (low side of normal, but high for us)PLTS: 195 (normal)

I look happy, but really injected your own daughter with chemo is something I never planned on (no one does)ever doing. You have to put on this blue suit, purple glove all to protect yourself from the chemo. There's an emergency spill kit and a yellow container everything goes into after. Then you have to call someone to transport this special chemo container.

Bald is Beautiful!

Avery you are Beautiful! Hair or no hair! This is all part of the process and one day I think you'll what to remember what you looked like without hair. This is suppose to be the last time it falls out! Your head is so soft! When you recently seen a picture of yourself  with hair you did tell me- "I sure miss my long hair and you were worried about not be able to be anything for Halloween without hair, but really hair doesn't matter-you matter", but soon enough it will be a memory and honestly I'm use to you with no hair and it's weird looking at pictures when you had such long hair. It seems so long ago! You are such a tough chick!! Thanks for the cute bows Cait-perfect timing!

Day 29 on Delayed Intensification

Tomorrow is count dependent and Avery's ANC needed to be at least 750 and platelets needed to be at least 75. I was secretly with Avery when she kept saying: I hope my counts are low, I hope my counts are low. It's crazy they understand what all this count business is about. Her ANC is 800 and platelets were 160 so that means we head back up for another trip to PCMC. Tomorrow she gets these chemos: Thioguanine (TG) it's a pill she'll take days 29 to 42, Cytoxan chemo, a IV over 30 to 60 minutes, Cytarabine (ARA-C) IV over 15- 30 minutes, she'll take this chemo the next 4 days, then 3 days off, then on for 4 more days. Lastly, tomorrow she has another Lumbar puncture where they put Methotrexate into her spine. She can't eat after 9:00 in the morning until about 2:00 when the procedure is done. Sometimes this isn't a big deal, but the steroid hunger is still present so it makes it tough when she wants to eat. It's going to be a long day, but we are half-way through this phase!

UPDATE FROM OUR TRIP (Oct 14th)

We survived another trip at PCMC. Catie (Jed's wife, Avery's Aunt) went with us to help with the baby and to experience a glimpse of what Avery has had to go through. We appreciated her coming. I tell people it's an experience you'll never forget. All these children, under different circumstances, having to overcome so much.  It changed the trip up for us and she is always so helpful and thoughtful.

Avery took awhile to wake up from her LP. I'd like to try the lighter sedation method some time, but they don't offer it on Friday's. After she got her chemo's (Cytoxan and Ara-c) we had a hard time explaining to her about how much better it would be to stay accessed for the next 4 days. It made her upset and she throw up all over me, her, the blanket and wheelchair...good times (Note to self: Seriously start remembering a change of clothes) She hated the thought of the needle being left inside her similar to her feelings when we had to talk to her about her port. (okay that was a lot more difficult)  I try to say it's just a tubie (some mom's use that terminology instead of needle) but she's too smart and informed me it was a needle not a tubie. It was a little rough Friday and Saturday, but by the third day she started thinking... this isn't so bad I at least don't have to get poked everyday. She had it taken out on Monday (17th) for a 3 day break then back accessed for the next 4 days. It's amazing all the hurdles we have to get over. We have only kept her accessed one other time and after 5 hours of hating it I was just about to call the home health nurse to see how I could take it out. She ended up not making counts so I had to go remove it anyway. At the hospital, I told her she didn't have a choice the first 4 days, but I would let her choose for the second round of  4 days staying accessed or getting a poke everyday. She choose staying accessed. I know she could do it!

I wish I would of taken a picture of Cait and Avery at the hospital, but I guess there was too much going on. Here's a picture of Avery playing doctor with her sister. I think it's good therapy for her to have someone else being the patient:)

 One of our home health nurses, Kristy giving chemo. She does a great job!

Thanks!

Thanks for all those that have remembered us in your prayers! It does help and we appreciate it! Avery is doing better; still up last night crying in pain, but still so much better walking and moving so thank you! She missed school this week except for taking her on her field trip to the pumpkin patch. I went with them to help. She was a little uncomfortable because her hair is gone again. Last night Becky come to shave the few pieces left to make it even. She got to shave her Dad's which put a big smile on her face. We have came such a long way since the last shave party! It's crazy how you get use to their bald head and she keeps saying how soft it feels. I think she looks adorable- I just want her to feel comfortable with it! She's such a tough girl for what she has to go through. I'm trying to remember "life is good" we really have so much to be grateful for and try to not dwell on the things we can't change.
We made a sticker chart so we could count down the days when we were done with the steroids! We were all so glad to be done!! Here you can tell her hair that had grown a couple inches was starting to come out again!

Oct. 7, 2011-We celebrated by burning the chart along with our extra pills and roasting smores at our house!

Oct. 12th-Going to the pumpkin patch on a field trip. She finally was getting her strength back and the pain was getting better in her legs and arms.

Oct.11- You can see there is just a little peach fuzz of hair left. This is before Becky shaved any stragglers, but not much was left.

I Love to see her smiling!

She was most excited to shave her Dad's again! She wanted to give him a Mohawk or strips or maybe I'll just leave bangs at the front.

Love the bangs Johnny-should have left them! I feel tired and exhausted most days, but Johnny looks like he could really use some sleep himself! She loves her daddy and he adores and would do anything for his girls!

Saydee once again kept wanting to shave her hair again, but we decided she better let it grow. This should be the last time Avery loses her hair! Making Memories we won't forget.

Say some prayers!

Once again we have been on the steroids this week. Just finished them Friday! Yay for that and no SL trip this Friday! Yay for that!! However as the week has gone by, Avery has went down hill. Nothing life threatening or anything like that, but is having severe leg and arm pain and for a mother (also for her father) it's excruciating to watch. Her medicine doesn't seem to be helping. She has been sleeping a lot this week and being up for a few hours wipes her out. The chemo with steroids mixed (more particularly the steroids) have once again caused her to have a hard time walking because of the leg pain. Her leg pain, even arm pain, this week has increased with each day and the last few days have been tremendous, similar to what we experienced in the first month during Induction. Luckily, as its gotten worse this week, we get to be off the pills instead of continuing. Please say some extra prayers for her. The roids have again done a number on her moods. Saying some not so nice things. She hates the noise (crying) the other two children make. Her hair in two days is so near to being gone, which I was warned she would lose again in this phase. And by again, she has really never completely lost all of it before. She lost most of it on top, but still had hair in the back that was really thin. Finally she broke down and shaved it. Her pillow has been covered with hair! She told me the other day (I hope it's the roids talking) that she doesn't like herself and she's ugly. For a mother, it breaks my heart! Emotionally she has some really good moments, but also emotionally some really hard moments.  As I I write this, I can't contain my emotions! Please remember her in your prayers. I can't watch her in so much pain. The roids take 7-10 days to get out of her system. We will pray for sooner! Thank you! We appreciate your prayers and know that our Heavenly Father will hear them!

Time for the Zoo!

We decided to make this trip fun before getting Avery's treatments the next day (Sept. 30th). She has been struggling with going and of course I don't blame her. Although I try to tell her all the fun things she can do while we are there: crafts, read books, watch movies, play games. Now doesn't that sound like fun? When I told her about the zoo she said I know what you're doing-you're just telling me were going to the zoo so I'll go to Salt Lake. Sad she didn't believe me, but the light in her eyes when we walked through those zoo gates was priceless. I love seeing her being a kid, enjoying her childhood and not having to worry! It was the first time, we took all 3 children and Kelsi was so glad to be with us. She probably thinks this is the kind of fun we have every time we leave and say we're taking Avery to the hospital. It was a good break from thinking about everything cancer. It consumes my every thoughts. Remembering all her meds, planning weekly trips, watching her in pain, thinking about what could happen in the future (late side effects) blah blah. So nice to focus on some fun and forget our worries for a bit! Treatment today, went fairly smooth. ANC is 1100, dropped from 6100, but I felt good about it. When on steroids their ANC gives a false high reading. We were off for 7 days, today back on the "roids" for 7 more days. Today was the same chemo as the last two weeks. It makes me sad that she worries and gets so scared to go to the hospital lately. This month she has started throwing up even before she gets her chemo. They gave us a pill to try for next time to help with nausea and to relax her a little. I tell her not to worry that's her parents job and not to be scared where by her side the whole way. But only I can imagine at 5 years old how hard it must be for her at times. After the last drip of toxins entered her body we jetted out of there. She was wiped out and instantly fell asleep. On the way home she woke up hungry & happy! Today while sitting in the infusion area I looked over and their was a 8 months old getting Chemo. I got tears in my eyes has it's hard to understand why these little ones have to go through this. I felt for this mother today & pray things go well for them. As we left the hospital I talked to a mom from Cedar who's child has relapsed from ALL, a cancer mom's worst nightmare come true. Again, I pray for these other families going through so much. At times I know it's hard for Avery to understand that this medicine that makes her feel so miserable at times will save her lives. She understands so much of whats going on. Avery you are so strong, brave and courageous to be going through so much and at such a young age! For me, the third child has been challenging. I feel like I run around all day and never get as much done as I'd like. The baby wakes every few hours and one of the side effects of steroids is difficulty sleeping so Avery struggles sleeping in the night so there's not a lot of sleeping in this household. So many times all three are crying for me, all for different reasons, but I am so grateful for them and know we can do this! So grateful that my sister has been willing to watch my kids while we go to the hospital. I love me 1 pepper & 2 salts:)

Roller Coaster!

Just one why I describe our lives "Roller Coaster". As a mom it's hard when one of your kids are sick. It was hard going to work and not always being able to stay home with them when they were sick, but they were sick a few days maybe even a week. Now, a week of watching your child be sick sounds easy, 2 1/2 years is exhausting. This last week has had some good moments and not so good.

We started the DI phase on Friday (16th) We gave Johnny a break and Kyle came with me for the weekend. She had treatments on day 1 and day 4, so we stayed for the weekend and left after her treatment on Monday, then home for a few days and back up on Friday (23rd) The appointment was bright and early at 8:00. So we left Rachelle's house by 6:30. She was given the chemo VCR and DOXO and this was our first day on steroids again. She also had a lumbar puncture. The last few times we have been at the hospital she has really started getting nervous and anxious. She refuses to eat and drink anything at the hospital & sometimes throws up before she gets chemo. It wipes her out and she was ready to go back to Rachelle's house to see her cousins. She throw up twice after steroids, so the Doctor wanted us to continue them for an extra day. She's a trooper even though she feels like crap when I go to take a picture, most the time, she tries her best to smile. They have therapy dogs come visit the kids and the nurses at the RTU posed for a picture. The nurses had lots of orange bands on their wrist since September is childhood cancer awareness month and ended up with the ones Kyle and I were wearing to add to their collection.

The next day she had more energy. I continued to give her medicine for nausea. In the afternoon we went to our first cancer event which was a fundraiser called Alex's Lemonade Stand you can learn about it here.
A fellow cancer mom, who's daughter also had ALL and is done with her 2 1/2 years of treatments does a lemonade stand every year to raise money for this foundation check her story out here.
Her mom, Kristin did an amazing job. On her blog, she does such a good job at describing how she feels and I totally relate to her being devastated about being so close to her goal of raising 10,000 and the passion she feels to help all the children fighting cancer. She was only short $700, but she should feel so proud. She put so much into it and we had an amazing time. So fun for all of us, but especially Avery. It was nice for Avery to meet and see other kids that are going through what she has to go through. She had a star on the wall of courageous and they gave a framed picture with some of the cancer kids to one of the sponsors. They also had her come up with other cancer cuties to recognize them. Kyle and I won raffle prizes and we all put in for a free drawing every hour and Avery won that. It was a good day!