So Behind....

I'm posing even though I haven't finished this post....but it's 4:44 a.m. and I added another post from tonight so I'll come back to this later.


November 11th-Start of a new phase Interim Maintenance II

I feel so behind....life is crazy. I know for everyone they think they're too busy all of us for different reasons. I just feel like my brain is fried most days with things to remember and I just get overwhelmed with all the things I can't seem to get done and the further I get behind updating this blog the longer I let it go. So.... lets play catchup. An awesome organization called Hope Kids which Avery and our family is a part of puts together a lot of special free events for these "hope" kids. There motto is restoring hope and transforming lives. We were so happy it finally worked out we could go to our first Hope Kids event to Disney on Ice. The Jense family already had tickets. We had awesome seats third row from the bottom. The girls absolutely loved it. When you have had to watch your daughter go through so many hard things that make her so unhappy, the joy of being able to see her face light up with happiness is indescribable. It makes me happy just seeing both of them happy.  They both deserve some happy times! They were in awe at all the Disney character, lion king, mickey, goofy, Donald duck, peter pan, tinker bell, snow white, little mermaid just to name a few.

After some fun, the next morning another trip to the hospital. My mom drove to Salt Lake with us this trip and she stayed with the kids while Rachelle came with me and Avery to the hospital. We had another LP which she had a hard time waking up from and she wakes up aggravated and cries to go home. We still had to go back upstairs for her chemo's. Next LP in 31 days, (if she makes counts every time) we are going to try the lighter sedation method they do across the hall from clinic. I think this may be a better option for us. We. Sure. Hope! As Avery walked by my computer tonight she turned away when she seen these pictures at the hospital. She said I don't like to look at any pictures of the hospital. She associates everything that goes with her to the hospital as bad. We tried to take our own water with us for her to drink, but she believes it also is contaminated like all the other snacks they have there.

Soon after I took this cute picture, Rachelle looked at the time on her phone and it said 11:11 and this day was the 11th month of the 11the day of the 11th year. Now that is a lot of 11's. (My camera was messed up and said the 10th, but it really was Nov. 11th) Thanks Rachelle for being part of this journey and coming to the hospital with us!

The child life coach downstairs at the RTU helped keep Avery's mind off of the LP and made some crafts with her. Those glasses are just a little bit too small:)

And again some fun....2nd hope kids event at the movie, Puss and boots plus free popcorn and drinks for the kids. Thanks again Hope Kids for making these kids smile!

We left Salt Lake after the movie on Nov. 12th, which is Johnny's 33rd birthday. Avery of course made plans all the way home, planning for her dad's birthday bash. We didn't get home until 4:00. We hurried and made a cake, blow up balloons with money in them and made a treasure hunt with the balloons. All Avery's idea. She loves to celebrate birthdays!

At the ER, Kyle always shows up to cheer us up!  Avery had been fevering and had thrown up this day. In the evening her fever went up high enough that we had to take her to the ER. Our happy face!

Our sad face

We love this little one! He's a chub-ber and at 3 months weighs 16 lbs 12 oz. He is a lot of work and my most fussy baby, but so stinkin cute!

She wore her clip on hair with wild colors. She teased the nurses and said look how fast my hair grow! They totally believed us. Okay Okay Just teasing they didn't really believe, but she did look darn cute.

This look so reminds me of Avery's cousin Kayden's look!

Yay! We went to the

Happy Halloween!

Avery had a blood transfusion two days before Halloween.  I worried about her not being able to go treat or treating and how devastated she would be. I want her to feel as normal as possible. To not feel like she's missing out on too much, of course all while not jeopardizing her health. We were in charge of treats for her Halloween party and she wanted to go and do the costume parade at school that only the Kindergarten class gets to do. I took her for an hour so she could be a part of it all. Saydee is such a trooper and is always watching out for Avery. We appreciate her so much! 

Her class posing for a picture at the school library.

I know compared to a lot of other cancer mom's I may let Avery do more. She's 5 and she knows her limits. We just have to keep her safe from sickness and use lots of saniziter. We have to make tough decisions about what's best for her, but we have to still live our lifes and amongst all the chaos try to keep things as normal as possible. Kelsi looked so cute as a bubble bee and Carson as a pumpkin. Avery really wanted me to dress up too... so I did! Johnny even dressed up like a hunter! Ha-ha only kidding. He wears that vest other days of the week.
 

                                 The cute cousins and Avery's sweet Grandma!

Trick or Treating at Aunt Becky's and Uncle Dave's. They were dressed as pirates and all looked so cute!

She tires easily. She was exhausted and ready to go home after just a few hours of only going to the grandparents and a few other relatives. She was perfectly content to go home and hand out candy. I was glad she was able to go and have some fun!

Blood Transfusion, Ear Ache, Fever=ER VISIT!

After Avery's blood transfusion at the ER last week, her hematocrit went up to 25. She started having headaches again and looking pale so we drew blood a day early to check her counts. Her hematocrit had went down to 21 and ANC went down to 300, but platelets did go up with was good because they were super low. So yesterday we spent the day at the Infusion clinic getting more red blood cells.  Two transfusions in one week. This is the 4th transfusion. One at dx, one is June before going to Yellowstone and 2 this week. It is so hard telling her we have to go to the hospital again. It never gets easier...she knows what is in store for her.

Now we are at the ER! Last night she started with a ear ache, along with her already having a cough that is always worse at night. So we were up as usual several times with Avery or with the baby. In the night she didn't have a fever, but when we took it this morning, it showed 101 to 102.  We we arrived at the ER, her fever showed 103. For cancer kids, they need to figure out what is causing the fever and where the infection is because it can be very serious. They want them seen if fever is above 100.4. They did a x-ray to check for pneumonia, urine test to check for infection and just drew labs to check CBC and will do a blood culture where they check to see if bacteria is in the blood. It takes a couple days to get that result back. Now just waiting. She so did not want to go back to the hospital for again an all day adventure and begged us not to take her.  I feel so bad for her (we don't want to be here either). Hopefully, they give us an antibiotic and we can go home!

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!