Supporting Avery at the Hospital

Avery's Sweet prayer the night before we left the Hospital:

Thanks for my family.
Thanks for my blessing.
Thanks that I can feel better
and help me that I wont hurt anymore.
Thanks for my blessings.
In the name of Jesus Christ
Amen.

Hooray were home!

Wow! It's so good to be home! A big thanks to the clean team who totally sanitized our house before we got home. They cleaned rugs, Avery's sheets, vacuumed, dusted, sanitized toys, floors etc. Also, to my dad & Shane who mowed my lawn and got my garden ready. The Welcome home sign that pleased Avery so and dinner all ready for us. Thanks so much!

Late Easter with Kelsi!

Even if it's just for 2 days it is so good to be home especially for Avery and for little Kelsi to have her parents home. This has been hard on Kelsi too, to not have her mom/dad around for a week. She was up to the hospital for a few days, but kids can not come back in the ICU (Immune Compromised Unit) and with all that was going on it was hard to leave Avery's room. Kelsi has been very whiny, clingy and just wants to be held today! It makes it harder to care for Avery. I want to help them both.


We colored Easter Eggs today, which was a highlight of her day. She was so disappointed to have missed that. Other then that, Avery has had little energy today and just wants to lay around. She's had headaches and has said it hurts to move her head. She hasn't had much of an appetite; however I feel like overall she's handled yesterday's Chemo pretty good. They say the treatments are going to get a lot harder on her body. At times she has been in such a good mood and other times I see the sadness of all this in her eyes. I, of course I'm heartbroken for all the things she's not going to be able to do. Finishing Pre-school, finish gymnastic she had been doing this year, tee-ball (although the last Doctor said if she feels up to it, let her play),going swimming, going to her primary class yudda-yudda-yudda. I know we were figure all this out, but for now it's overwhelming and I'm scared and the fear of ever losing her it indescribable. We thank you for your prayers and I'm grateful that PCMC figured it out so fast.

Things to look forward to (Not really): On Friday (29th) we'll head up to PCMC. She can't eat until after her Lumar Puncture. First, they will draw blood and check her counts. If they're too low she'll get an another blood transfusion. She will get her Chemo treatment through her port. They will again put her to sleep and draw fluid from her spine to test to see if they find any cancer cells there. Last Friday it came back negative, but they will check every time we get a Lumbar Puncture, in case any cells they looked at were missed and to once again insert Chemo through this puncture that goes from her spine into her brain. The spinal tap is a place that Chemo doesn't get. It will be a long day! And Kelsi will get abandoned again. It's all very over-whelming to think of the big picture of 2-1/2 years of treatments, first 9 months or so of more extensive treatments, trips to SL every Friday for a month or two; however I'm trying to just focus on week by week and get through each day.

Chemo Treatment #2

This is what the port looks like with the bandages, when we leave
the bandages will be removed.

Today Avery started her second round of Chemo treatment called Asparaginase at about 11:00. They then have to monitor her for at least 2 hours for any side effects. She gets steroids twice a day and on Monday & Tuesday she gets Septra this helps to prevent a certain type of pneumonia. She gets lots of medicine and at home we will start giving them to her. Before Chemo they always draw blood to check all her levels to make sure she doesn't need blood transfusions. Today her WBC (White Blood Count) was only .8, yesterday it was 1.4 & normal is 5.5 to 15.5. Her ANC, which tests how good her body can fight off an infection was back down to 300. In the ICU, if it gets below 500 they don't even let the children leave the room. She handled the Chemo really well today and she really wants to go home.

She's getting really good at handling her cart of med's and IV lines. When I help her to the restroom she sometimes want to go a lot faster then the IV lines will reach. I have to remind her to slow down. She's getting more used to her port, which is where she receives her Chemo. The port is used to draw blood or give medicine. Their is a special needle that is inserted through her skin and into the port when she gets treatments. She has IV lines in still and Friday will be the first time they insert the needle in the port. The first time will be fun for us, but she's tough and I'm sure it will get better. Today they took off the bandages on her port since surgery, which was taped up good and had lots of cotton balls. She did not like this. And again was upset with the nurses. If everything goes well, we may be able to leave later on today! Yeah! Let's hope it will happen!

Supporting Relay for Life

Walking for two groups in the Relay for Life we didn't realize that just one short week later that Avery would be diagnosed with Cancer and we would be fighting this battle with everyone else here.

We had expected we would be at Primary Children's Hospital for a few hours for blood work for Avery and then would go home, so we didn't bring a lot with us. I did have my camera, but no charger so no new pictures. I do have a few from the last few days! Last night was the first time I left and stayed at Rachelle's. I have gotten very little sleep since Thursday and they only let one person stay. Besides having a hard time sleeping anyway, they are giving her 4 ounces of liquids an hour to hydrate her and flush out any toxins so they come wake her up every 2 hours to use the bathroom. No sleep here!

Today, has been some up and downs. They give her steroids twice a day called Dexamethasone. There are several side effects. We have experienced a few in particular increased appetite and irritable and mood/behavior changes. On Sunday night, she had her first round of Chemo, along with the steroid. Throughout the evening she wanted pizza, Popsicle, chips and at midnight she said, "Mom I want some strawberries". Finally something healthy, however the room service where she gets to eat anything anytime was closed. It was definitely surprising on how much she wanted to eat. Another side effect of the steroid is being ornery and irritable and that has shown its face as well. Yesterday and today, she turned into a Grizzly Bear from the steroids. At times, she can already be a little firecracker so the steroids don't help. She was having leg pain again which is a sign of Leukemia and something she (we) have dealt with for weeks so that didn't help. During her Grizzly Bear episode She said, "She didn't like the doctors and hated having this stupid port". Pretty strong words. I know this has been so much for her to take in. So much for all of us to take in.

Avery's bruises that she had all over her legs and a few on her arms are finally starting to fade. This is another sign of Leukemia because there platelets are so low that they start bruising. Dangerously low. I noticed the bruises a few days before we came up here, which had me concerned because in the last few weeks she's had little energy to do to get those bruises. When we were driving up here, I told Johnny to remind me to tell the Doctor in case they wanted to call child services j/k in case that helped them solved the mystery of what was going on. I noticed when I told the Rheumatologist Dr. that her expression changed, but she didn't say much about it. She will still get bruises and bleed easily and the big concern is fevers. If her temperature reaches 100.4 we are to check it again a 1/2 hour later if it goes up then we are to immediately take her to the ER. Her ANC (absolute neutrophil count) which is a measure of the infection fighting white blood cells. They are responsible for fighting bacterial infections. They are normally in the range of 8500 to 1500. Over the last few days they have been 200, 300 and today 600. Tomorrow she has her second round of Chemo which will start dropping her ANC levels again. So she has to be so careful especially around crowds and anytime we leave her room she has to wear her mask. Crazy how fast our lives can change.

Thanks to all for their kind words, words of encouragement, special gifts for Avery or snacks for us, visits here to the hospital (grandparents and  Jense family who have come faithfully to bring up Avery's spirits. It has helped tremendously. Thanks to Kyle, her child life coach who makes her smile), Cecilie for bringing dinner and those that gave Avery and us a priesthood blessings. This is going to be a long-hard road for our family! We know our Heavenly Father has been watching over us and we feel your prayers. Thank you! We appreciate it!!

Easter Pic's From the Hospital!

Definitely not how we had planned to spend our Easter, but the Easter Bunny still found us! My very smart Bro said, "To celebrate the good times". Here's a few of those times!