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!

Friday, April 22, 2011

Avery right before Surgery!
Today we knew it would be another hard day. Last night, I hardly slept, re-thinking over the day's events and what was in store for us tomorrow and especially thinking about little Avery. Last night, they went over what would be happening today. She received a blood transfusion in the night to bring her blood counts back up. Her Homoglobin (Iron) was at 7 and they like it between 11 & 13, her WBC & RBC (white & red blood count) were low and they needed them to be up for her big day. Her platelets were low and low enough that before surgery they had to give her another transfusion. She's having surgery today and can't eat/drink after 6:00 a.m. so at 5:30, I woke her up to give her something to eat and drink. During surgery, they took some of her bone marrow to test to better understand what kind of treatment she'll need and to check the chromosomes. Also, they did a spinal tab to get a sample of cerebrospinal fluid that is around the brain and spinal chord. They examine this under the microscope to see if their are any cancer cells there. Because this is a hard place for the Chemo to reach, they inserted a syringe here with her first bit of Chemo. After the test come back, they will know if they need to continue doing a spinal tab to treat this area during treatments. Finally, they needed to implant her port or central line which is the hardest for Avery to understand. This is a tube they place in her vein in the upper chest and it goes underneath her skin. She has struggled with having to constantly have an IV and trying to explain this to a 5 year old has been difficult. I knew she would be a little crazy about something going underneath her skin that she couldn't get out. She cried a lot about not wanting that "thing" in her. Were they going to cut her open? We tried to explaine as simplify as we could, so she wouldn't be too freaked out after surgery. Surgery wasn't until 1:30 and she was thirsty and hungry. She was scared for surgery and we tried to hide how scared we were too. Johnny & I were anxious to get this part over with. They gave her medicine to relax her which seemed to help. I promised that I would be there when she woke up. They wheeled Avery one way to surgery and we went the other to the waiting room. This was the hardest part, I didn't want to leave her alone. I prayed that this hour would go by fast. I knew she would be in good hands and would be put to sleep soon. The surgery was a success and took closer to 2 hours. Avery was very agitated and mad at those doctors for doing that to her. It hurt and she wanted it out. It broke my heart, but I knew we had no choice. They gave her pain medicine and something to relax her. Kyle did wonders for Avery. She went from being so mad, to being so silly. He would ask her questions and she kept telling him funny answers. We were so relieved that this part was over. Only 24 hours since we first found out Avery had Leukemia and it feels like so much longer.

Shouldn't Avery be having thumb's down & Kelsi thumb's up?


After Surgery, Kyle making Avery happy!

What a Shocker!

I've been so inspired by a few of my college friends, whose parent is battling cancer or whose children has a severe medical condition. They have always amazed me with how courageous they are. But no, I never thought that our family would be going through a similar experience. Or No, while walking for two groups in the Relay for Life against Cancer did I think just a short week later, we would start our own fight against cancer. On April 21, 2011 we found out that our sweet Avery has leukemia. What a shocker! I couldn't even say the word cancer without bawling that first day..... well I still bawl if I say it. Our whole day changed! Our hearts were crushed and we were scared for what she would have to endure, along with all the other worries. Avery has been having back, abdominal and leg pain and on Feb. 27th I took her to the ER to figure out what was going on with her. For those that know me well, we don't visit doctors much especially not the ER. We have never been to the ER before. After lots of x-ray, cat-scan, IV, blood work, etc.. they found some major bowel blockage. She was also slightly anemic and her C reactive Protein (CRP)was high at 37, which means she had inflammation. We kept struggling with the bowels and I kept calling her Dr. to try to figure out why she was still having such pain. We did more blood work on April 8th and tested the CRP again and also tested something called ESR (Sedimentation Rate). After a few days and no response from her DR. I called and got the results from the hospital myself and looked up what the results meant. The CRP had went down, but was still high and ESR level should have been between 0-10, but was 110. I know something else had to be going on besides her bowels having issues. I had looked into it enough to know what some of the results could mean, but tried not to think of the worst. Her Dr. decided to send us up to Primary Children's Hospital to see a Rheumatologist Doctor for additional blood work to try & figure out what was going on with her. Her color had been so pale and I was concerned about lots of bruising that started showing up on her legs. When the doctor introduce the social worker to us I became more concerned. The Dr. had her labs back and said that her white blood cells were low and they had found abnormal cells in her blood. "As she got tears in her eyes, she said I'm sorry to say, but your daughter has cancer". I was in shock and my heart was crushed". No way, were they sure? Yes, they found something called Blast in her blood and knew it was Leukemia, but wasn't sure what kind. We were devastated and my heart ache for what Avery would have to go through! The rest is somewhat of a blurr...the arthritis doctor went with us to admit us to the hospital, then up to the cancer clinic on the 4th floor to talk to a cancer doctor (Oncologist...I didn't even know what a cancer doctor was called until now) and discussed what was next for us, social workers showed up for us and Avery. Then IV team showed up to give Avery another IV which was traumatic (she already had one at the ER), and then we were off to ICU )(Immune Compromised Unit to get our room. Room number #4113. They would have a team of Doctors that would decide her treatment plan. We tried to keep somewhat of our composure around Avery, but she just wanted to go home. After a few hours, we finally had the chance to call and tell our family the news.