Merry Christmas!

The best Christmas present ever....Avery felt so good. Not one complaint all day which doesn't happen too often. She had 2 chemo's through her port just 3 days before so we were worried how she'd feel. Her ANC was just 600 so we had to be careful, but we got to enjoy a lot of fun times. I love spending time with my family, all three of them are such a joy. We have survived 8 months of treatments so far with 19 months to go. My countdown on the blog page says 574 days left. Still so far to go, but glad we have a lot of days behind us. Seems like such a long time, but we reached a huge milestone and made it through the most active part of treatments-the 5 phases before maintenance. Over these last 8 months we remember all the support....the kind words, phone calls, notes, service, meals and generosity. Having people care so much keeps us going. Thank you!

Christmas Eve-Avery and Uncle Kyle having a competition to see who's hair grows back the fastest.

Avery and Kelsi spreading their reindeer dust that Aunt Catie gave them.

 Acting out the nativity at Grandma house! Carson was baby Jesus, Kelsi was a shepherd, Avery was Mary and Kyle was such a trooper and was the donkey.

    

Kelsi wanted barbie's and a vacuum for Christmas and Avery wanted barbie's and a guitar.

I love these three!

Interim Maintenance II is OVER!

We dropped Kelsi and Carson off to sleep at Grandma's so we could get up early and leave for our Salt Lake trip.  When we got home at 10:00 p.m., I had to take advantage of only one child and try to get things done. Avery had fallen asleep earlier in the night so she wasn't tired. After her dad fell asleep in her room she sneeked out and stayed up with me way to late. After only 3 1/2 hours of sleep it was time to wake up and get ready to go to Salt Lake.  Her counts were ANC 600, Platletts were 111 so she got Methadraxate, but because our ANC wasn't over 750, they didn't excelate. Instead they went down 20% of our last dose which was December 1st. I really was dreading this trip where it's only three days before Christmas and I want Avery to feel good.

It was snowing and the roads were bad until Scipio. The clinic was super busy. At the hospital we were trying to bribe Avery to drink and eat popsicles while getting Chemo. They say this can help with mouth sores. We brought are own drinks/popsicles, but it still didn't work well. Dr. Wright isn't there on Thursdays and when another Doctor came in and she heard us talking about medicines and such. She started throwing up again. More anxiety and stress on this little one.  We were there over 3 hours. After our Methadraxate and Vincristine were over, we were ready to go home. Then the nurse came in to ask if it was okay if some of the players from the Utah Jazz came to visit. Of course! Hello! I immendiately thought of my twin Kelly and how much he has always loved the Jazz. He would know everything about these players and could chat it up. Johnny and I not so much. I even like sports, but haven't watch one of their games since the good ole boys played like Karl Malone, John Stockton and Jeff Hornaceck. I had to quickly explain to Avery how cool this was. She had just finished up Chemo and wasn't feeling too great so didn't have a lot of smiles. We were glad they were willing to take time to come visit these sick kids at the hospital at Christmas. Kids shouldn't have to be there ever, but especially this close to Christmas!

We didn't get the opportunity to meet the boy who we took some presents and money too, but did see a little Christmas tree in his room, which made we feel happy. His mom wasn't there and of course with all the privacy laws we couldn't hand it to him. We left it with one of the nurses. I walked back down during Avery's Chemo treatments and the mom had came, but was talking to the doctors. I just hope it brought some joy to him today! It was fun to do something for someone else! The countdown to Christmas is on! I'm getting more excited. Glad today is over with and pray that Avery can feel so good on Christmas!!

2 days of fevers-Interim Maintenance Day 27 to Day 42

I'm trying to keep this up for a record for Avery and our family of our journey. The good times and the hard times, but I'm struggling.

Last week was some very challenging, long, tiring few days and Avery has to just take what comes.

Wednesday (Dec 7th): She wanted so badly to go to her Elementary Christmas program, but her mouth sores were getting so bad. She was having a hard time talking. She insisted she was going so I told her if she had to, to just mouth the words to the song. During the program, she was so excited when she seen Jed on the big screen honoring the soldiers. I took her to Carson's 4 month Dr. appointment to see if there were anything else we could do for mouth to give her some relief. We already have a mouth wash, but he prescribe one with numbing stuff in it. We got home just in time to start getting ready for the night Christmas program, but she was just in too much pain and I told her maybe we better not go. She felt so horrible she went with this plan. I was so glad she and us were able to watch her in the morning. I just hate she (and us) have to miss out on so much.

Thursday (8th):We did try to go to the airport to see Jed fly in from Iraq, something we were all so excited about. We went knowing we would most likely be staying in Cedar going to the hospital because she had a fever. At the airport, we seen Jed for a minute, but the crowds caused me to panic and Avery did not feel good and sleep in my arms. I sat with Avery the farthest away from people I could find. Her fever continued so we started making phone calls to the oncology office.

After seeing Jed at the airport we headed to the Doctors office for her fever. Her pedicitrian was nice and was willing to treat us there instead of going to the ER, which she absolutely dislikes. I called and arranged for Home health to come access her port. She missed on the first try. Then the normal routine every time she gets a high fever: CBC check, blood culture, give her IV fluids and antibiotic through her port. She was having difficulty swallowing at all. The sores were on both cheeks making them swollen, on her tongue, down her throat, on her lips making them bleed and underneath her tongue. This were worse then the time she got them on Interim Maintenance I. I felt so bad for her. She was throwing up. We went home and was able to see Jed again for a minute, but she was just in lots of pain. Typically we can not give her Tylenol because they don't want it to mask a fever, but where she had the antibiotic we can for the next 24 hours.

Friday (9th): Again she started fevering (is that a word?) around 5 in morning. We kept checking it and it reached 102. They want them seen if it gets 100.4 or higher. We called oncology again and she said where it hadn't been 24 hours yet we could give her tylenol again and not go to the ER, but wait until her pediatrician office opened and go there. Yay for that. We went back and did the same routine as the day before. She wasn't able to eat and throw up a lot from all the crud down her throat. Her counts were dropping. She was out of it and was so tired and felt horrible. Home health come again to the doctor's office to access her and it took three tries. Seriously. I. Hate. That. Her HCT was 20, HGB, 7 and platelets were dropping to 64. I knew we were getting to the point of blood transfusion. We were scheduled for CBC on Sunday for a trip to SL on Monday. Her oncologist said lets see what they do.  She didn't want to stay accessed, but we knew HH was coming to check counts on Sunday plus we thought we'd be going to SL on Monday. With so many pokes this week the chance of infection is greater. I told her I would pay her 5.00 to stay accessed until Sunday and 10.00 if she keep it until Monday. She was mad at me, but we left her accessed. I think after more pokes she decided this wasn't so bad and she stayed accessed until Thursday when we ended up going to SL.

Saturday: (10th)Finally some big improvement. Was able to eat, had some energy (even though her red blood count was dropping) and her mouth was looking a lot better. She was up and going, so this was a big improvement from where we had been.

Sunday: (11th) Another blood draw to see if we made counts. She needed her ANC to be over 500 and platelets over 50. I was somewhat surprised she didn't make counts on ANC or platelets. I was just about finished packing, had arrangements for the other kids, Grandma Kathy was planning on coming with us to go to a program of Landon's and boom you remember....with our lives you have to be so flexible, change of plans is the norm and you can never plan on anything nor should anyone else. Grandma left for SL by herself. Avery's ANC was exactly 500 and platelets were 46. Her RBC were still low, but holding were they had been on Thursday and Friday.

Monday: (12th) Primaries calls and said I guess you know Avery didn't make counts. Also they told me she needed a blood transfusion. The nurse asked about her energy because when your red blood cells are low you are pale (yes she was) and you don't have energy because your oxygen is low. We had seen a major improvement from how she was for 3 days. She has to have special radiated blood so they had to send for it from Salt Lake. They told me it was being flown in. Thanks to all those that donate your time and give blood. It really does save lives. So glad someone out there was able to give my little girl the blood she needs and I'll never know who that someone is.

Tuesday: (13th) We had a blood transfusion at the infusion clinic. Avery was getting discouraged and somewhat upset. This is just too much time for a kid to be at the hospital. She had had enough and honestly we are getting so worn out. So glad Miss Iron County came to pay her a visit. I so appreciated her lifting her spirits. I have no idea why I didn't even snap a picture. What was I thinking? Obviously I wasn't. Her platelets dropped to 26. A transfusion of red blood cells don't make platelets go up. If they go too low, we have to have a transfusion of platelets.

Thursday:  (15th) Back to SL to the hospital. We had to go no matter what her counts were. She got Vincristine chemo, but her Doctor said she was holding the MTX chemo due to her bad mouth sores. They didn't run a CBC to see if she made counts on her platelets the Doctor had already made up her mind about no MTX this time. Of course mixed emotions we don't want to see her that bad, but that means we go back in 7 days (right before Christmas) instead of in 10 days (right after Christmas) Not sure which is worse, but I think I'd rather after Christmas so I make sure she feels good on Christmas. Just one more thing I can't control.  I want to enjoy Christmas and try to forget about all of this and more importantly just have Avery feel good.

Also, today was our first time to try the lighter sedation method for her Lumbar Puncture. She stays some-what awake, her eyes are open, but they give her medicine to prevent her from remembering (versed) and medicine for pain/sedation (Ketamine). I get to stay in the room so that is good. She was scared and cried a bit. It was just something new, but she handled it like a champ and the doctor and nurse said she did perfectly. Good Job Avery. Love you!

Thursday (22nd): It's 1:00 in the morning and I'm adding to this post I never finished. In 4 hours I wake up (along with Avery and Johnny) to get ready to leave for yet another trip. Although we go so close to Christmas and that is for sure not ideal. We have reached a HUGE milestone. This will be our last treatment on this phase and with the most active part of treatment. We will have two weeks off! Doesn't sound like much, but we'll take it. We want to celebrate big. It has been a long, tiring, worry-some 8 months and will continue to be. We are so grateful for those who ask how we are doing and care so much. It really does keep us going. We are just so ready for life to slow down even just a little bit. I don't want to look back and forget this time with my other children. We are excited for this big milestone and want to plan something pl. Any ideas?

As Christmas is so close! We again are reminded of those generous people that do nice things for us. We appreciate everyone's support! At times, you feel so isolated in this "cancer world", but then someone lifts our spirits again. We had a loud knock on the door and there were 3 books with a jar of money. So nice! Or someone knocked and when Johnny answered they handed him a card and ran. He was literally speechless. Part of me wants to know who they are, so I can thank them.  But obviously they don't want us to know and who knows maybe they'll know of our appreciation by reading this.

We want to pay it forward in some small way and are excited tomorrow to take some presents to a 4 year old boy tomorrow who will be staying in the ICS for a long time (this is where we stayed for a week when Avery was first diagnosed). He has relapsed from AML and he is alone a lot of the time. The staff sit with him at night, until he goes to sleep. I can't imagine Avery being there at the hospital by herself.  It breaks my heart.

Thank you to ALL!

Mouth Sores-Interim Maintenance II-Day 28

Early Morning of Dec 8th: It's 3:00 a.m. and Avery finally went back to sleep, after getting enough courage to swallow her medicine. It causes her so much pain to swallow. I can't go back to sleep. She can't eat, is hardly drinking and has had her head in the tiolet or trash can more then once tonight (or should I say last night). This chemo methadraxate again has caused her to have severe mouth sores in both of her cheeks, on her bottom lip and down her throat. It hurts her to even talk and her voice is so raspy. It is causing her so much pain that I can't help but wish, I could take this pain from her.  I hate that there is... Absolutely. Nothing. I can do to make it go away, but comfort her and tell her I'm sorry as I watched her have to suffer through this. I think of others that have a child with a long term illness, longer then 21/2 years, some a life time of taking care of them or of those I know that have had a child they have lost. I have seen a glimpse of their pain and want to help them even more.

Watching her in pain, I think in some small degree this is what it felt like for our Heavenly Father to watch his son suffer on the cross. It had to be intolerable, yet he endured it. Tonight also reminds me of another night I pleaded with Heavenly Father to please make her pain go away. That I couldn't take it anymore, I couldn't take watching her in so much pain. I had a strong impression that he too has a hard time watching her in pain. And again that night I thought of him having to watch his only begotten son suffer too and Can I even imagine how hard that must have been?

Avery I hope you know what an inspiration you are to me. I have never heard you feel sorry for yourself. Never say why do I have this or why do I have to always be sick, but know of your disappointment at not being able to go to your Christmas performance tonight. Although it was painful, I'm so glad you got to go this morning and we were there to watch.

I think back at a few stories you told me in the middle of the night when you couldn't sleep. I was so impressed by your responses I got up at Rachelle's house and wrote them down so I wouldn't forget.

The first....You went to your cousin's family get-together for a birthday celebration. Kids there didn't know you and out of curiosity ask why you didn't have any hair? You told them you had cancer. They said, "I feel bad for you" Without hesitation you said, well...what color of hair do you think I had? Their response. Orange? Red? Brown? I finally told them black. Then I told them the story of what happened. I slept at my aunt's house and my legs hurt really bad. Then awhile later I slept there again and my legs hurt. Then Justin said (her Uncle) you should go to Primaries and they figured out I had cancer. Although not exactly correct. I liked that she gave Justin credit. Maybe him helping/giving her a few priesthood blessings which eventually led us to primaries left an everlasting impression in her mind. I was so proud of how she handled this situation.

The second.....Avery said, "At school a 1st grader said, Are you a boy"?  This broke my heart as I've been there before and seen your face drop as someone has said something similar before. I asked her what did you say?  I said, "No I'm a girl I just have cancer and take medicine that makes my hair fall out." Then you said that Saydee started getting so mad and said she is not a boy. Good ole Saydee will stick up for you anytime. I'm not going to lie, this one crushed me,  but I was so proud of you. I found myself even a little mad that this kid would say that, but I know kids aren't afraid to say what's on their mind and mostly aren't trying to be mean just curious. I told you kids are curious and don't see many kids without hair, but I was so proud of how you handled it.

Avery I am so proud at how strong and courageous you are. You have to do more scary thing then most kids do and you handled the situations perfectly.

I have to also say....your dad once said it sounded like I do it all which I would never say is true. He doesn't like to be in pictures, he doesn't like to update the blog and doesn't like to leave comments, so it's my thoughts and stories that get written, but know for sure he has been there, By Your Side, Every Step Of The Way and a lot of times when I can not . Every picture you'll ever see or every experience we've had through this journey he too has been there and has had a lot of emotions that only he can describe.

Before this 3rd treatment of this phase (Interim Maintenance II) you had a great week, maybe even two. This is a comment your dad left on the blog so I'll post it here. Johnny's words...So I just got off work and lying here by Avery and thinking what she told me the night we got home from salt lake she says dad I don't even feel like I have cancer any more I just feel normal. Pretty amazing for someone to say just hours after having poison shot through her veins or chemo. Avery you are a very strong little girl keep up the fight and I'll try and keep up with you love dad.

It's now 5:02 a.m. good night or should I say good morning? We are suppose to meet Jed at the airport at 7:30 from being in Iraq since June.  I'm afraid...she may be disapointed again. She (we) are so excited to see him and for him to meet Carson.

Oh crap....her temperature is 100.5 right now PLEASE no ER visit.

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!