Video of Erin's Cancer Story

I am finally finished with a video I made that sums up Erin's cancer story.

Making this video was emotional for me as I looked back to what our family went through.  But, at the same time, it was also very soothing to my soul as I see the strength we received to overcome.

I am forever grateful for the whisperings of the spirit in May 2010 that told me that something was very wrong with Erin's little body.  These promptings led me to have Erin's blood tested.  She is such a strong little girl and she has overcome more than any two year ever should.  And, all through it, she kept a beautiful radiant smile on her face.

No More Chemo

No More Chemo!



Chemotherapy Round #5

***Our LAST ROUND has begun***

5 months 11 days ago our world changed.

Words cannot express the joy we feel knowing that this is Erin's last round of chemotherapy! 

The end is near. 

On Thursday my mom took Erin to Primary Children's Medical Center.  Dr. Michelle Bennett did a biospy on the Cellulitis sore in her diaper area.  She took two 3mm circles from the Cellulitis and sent one to Pathology and one to the Microbiology Lab.  So far, all of the results have come up negative for a bacterial infection, leukemia cells, or a fungal infection.  That said, the results really won't be in until Friday or Saturday since it usually takes 48 hours for the cultures to start growing.  We anxiously are awaiting the results.  Erin is doing really well!  She had morphine and oxycodone shortly after the biopsy because her pain seemed pretty bad.  Today though, she has only had oxycodone and she is so happy!  The Cellulitis is looking a lot better too.  Her CRP (inflammation in her blood) came back at 0.6.  Normal is 0.8 so we are extremely HAPPY!

Erin and I played "peek a boo" a thousand times while we waited to start chemo.

Our nurse Amy and another nurse Cathy brought in the ARA-C (chemo).  Erin was ready to show off as you can see by her silly position in this picture.  She is so excited to be almost done!

Nurse Amy posing with the ARA-C.

The ARA-C going in. 

She gets 120 ml in each dose and it runs for 3 hours.  It's a huge amount!  She will get 4 doses of ARA-C.  On Saturday at 8:00 am she will get a PEG shot (Asparaginase, chemotherapy) in her thigh.  We are not looking forward to the PEG shot.  Then they will send us home for 5 days.  Her counts will start dropping while we are home.  Next Thursday she will be admitted for the rest of her chemo and she'll stay for roughly 3 weeks.  Then, we will be done.

All hooked up.

Happy to be starting the last round!



Erin is in room 4409.  We are counting our blessings that we are here and going forward with this last round.  We are so thankful for everyone's support!  As I entered the hospital today it almost felt like home.  I passed so many parents, doctors, nurses, and techs that we now know so well.  Within a few hours of being here we had gotten a text from a friend doing her treatment in the Oncology Clinic and a visit from Marie Steele who also has a daughter with AML.  We are thankful for our support group here in the hospital. 

Well . . . here's to a great start! 

Details on Chemotherapy Round #4

Intensification Chemotherapy, Round 4 of 5.

This round of chemotherapy has an average stay of 35 days.  Chemotherapy will last 6 days so she will spend most of her time waiting for her blood counts to recover from the chemo.  Erin will receive ARA-C 2 times a day for days 1-4.  She will be given Mitoxantrone (I hear it's bright blue) 1 time a day on days 3-6.  We are started her first dose around 8:00 pm last tonight.  The Mitoxantrone is a chemo drug we haven't taken yet, but it is similar to the Daunorubicin that she had before.  In a few posts ago I mentioned that we were part of a clinical study on a new drug, Gemtuzumab, but that she won't be getting the new drug, she is just part of the study.  I know it was right that we weren't supposed to give her Gemtuzumab, but at the same time I wonder what kind of side effects it would have on her if she did have it.  They give Gemtuzumab on day #7.

I talked to Dr. Barnett about the long term treatment that Erin will have with her AML.  It may seem strange that I haven't asked many questions about her future treatments.  I have not asked because there is so much to take in for each of her 5 treatments that we just couldn't add more details (or emotions) to what we have been slowly learning and processing.

When Erin is done with her chemo (anticipated to be before the 1st of December) they will take out her Central line.  YES!  That was the best news.  With her central line in place she cannot take a bath (which also means, no swimming).  It is such a pain to take care of her line.  I constantly worry about it getting broken.  It is also so invasive and people can see her tubes sticking out and I guess I'm a bit self conscious about that.  Being bald is something for people to stare at too.  I guess it's just that I really don't like having so many things on her outside that make her stand apart from a normal two year old. 

When her treatments are done, then she will come back to the Hematology Clinic at Primary Children's once a month to do blood tests.  The second year after treatments she will have Clinics every other month.  The third year after she will go back every 3 months, and so on until 5 years.  After 5 years she will only come back once a year until she is about 18 years old.  If she stays in remission for 5 years after her treatments then it is very unlikely that she will ever relapse.  The next 5 years will be a little nerve racking for me, but I'm thankful that I have the Spirit to comfort me when things get tough. 

If she does relapse, then she will have 2 rounds of chemotherapy and a bone marrow transplant in her future.  The bone marrow transplant can come in 3 different forms from a perfectly matched donor- (1) actual bone marrow from a donor, (2) stem cells from a blood draw from a donor, or (3) stem cells from chord blood.  It was all very interesting to understand how it all works and I am so thankful that Dr. Barnett took up so much of his long day to talk with me. 

Erin's about to receive her ARA-C this morning.  She is eating her breakfast and watching TV.  I woke up this morning to Erin sitting on her bed furiously waving at me.  She is such a sweetie.  It is a wonderful experience to take care of her while she is here.

Round #3, Day #1

John and Erin went off to Primary Children's today. It was a sorrowful parting. I have come down with a sore throat and runny nose (probably got it from Caleb, he was sick with the same thing at the beginning of the week). I felt so bad that we couldn't go to SLC together as a family. We can't stay at the Ronald McDonald house if we are sick and I wanted to stay away from Erin so she wouldn't get sick. John and I went to the Temple last night and we both felt good about this next round of chemotherapy. This morning he gave her a Priesthood blessing of heath and strength.

The bone marrow results came back and they were clear. Erin has 0% Leukemia cells left in her bone marrow. YAY!!!! This is what we want to hear and we are so thankful that she is at 0%.

Erin and John had a wonderful time together at the hospital. They read a lot of stories and watched a movie or two. She received her first does of ARA-C. She will have 10 doses over a period of 5 days. She will also reciev 5 doses of VP-16 over the 5 days. Last time the ARA-C was 6ml and this time it's 60ml. When she was getting the ARA-C John said that she grimaced while it was going in and that she kept rubbing her chest, otherwise she seems to be doing well. She ate a good dinner and went to bed around 8:30 pm. I am glad that she slept so well here at home so that she could store up some sleep for the hospital.

We've noticed that the skin on her fingers is starting to peel off. John asked the nurse about it today and she said that is a normal side effect of the chemo. She said she's seen kids with the skin peeling up to the wrists. We've been lotioning her hands, but she likes to pick the skin off. Niiiiice.

Round Two!

Here we are at Primary Children's and it hardly feels like we ever left. There are so many familiar faces between the staff and other parents walking the halls.

Erin had an echo cardiogram and the results look normal. Some of the chemotherapy can give her heart disease, but so far so good.

She also got the results back on her spinal tap and it was all clear. No leukemia there. There weren't any leukemia cells the last time they did the spinal tap, but they re-do it just to be sure.

Her bone marrow bioposy showed 2% Leukemia cells left in her marrow. When she came to the hospital last time and they did the bone marrow sample it was so hard for them to get the sample so that they didn't get a good reading. So we don't have a number to base results on. Usually though, patients with Acute Myeloid Leukemia have around 80%-90% Leukemia cells in their bone marrow.

2% Leukemia cells is good for now. For other types of leukemia there usually isn't any leukemia left, but because Acute Myeloid Leukemia is more severe (and more rare) they are happy to have less than 5% leukemia left. We are thankful that it is less than 5%.

We had a really fun nurse today, his name is Irish and he is probably in his 50's. He has a ponytail and a big beard and when he comes to visit Erin he tells her that she has stinky toes and she laughs about that. When we were getting settled he went over a bunch of questions with me. One in particular stood out to me. He asked, "On a scale of 1 to 10 what is your stress level?

I thought to myself, "if I say zero or one, I'll sound like I don't care. I don't feel stressed at all. I think I'll say two just to sound normal. Is this normal? Maybe I should be a 9 or a 10 because this new lifestyle should be stressful right? I wonder if I say something high if I'll get a prize or something?" My mind then wandered to a Brian Reagan blip called "Say Eight." If you haven't seen it, find it and see it. You'll laugh really hard.

I told him "two" and his facial expression didn't change. It made me think about why I am not stressed out? There are a lot of reasons, but mainly it all goes back to my very first post on this blog about the wise man building his house upon the rock. I have recently grown a deep love for the hymn "How Firm a Foundation". The gospel of Jesus Christ is a firm foundation in my life and in every condition, in sickness, in health, in poverty's vale, or abounding in wealth, at home or abroad in the hospital, I'll never forsake. I know that it is my Savior who has given His life for me and I know that He lives. This knowledge gives me hope and it is that hope that makes me feel absolutely wonderful despite what awful things are happening.

Erin started her second round of Chemotherapy today at 6:00 pm. This round is only 8 days long. She'll have 16 doses of ARA-C, 5 doses or Daunarubicin, and 3 doses of Etoposide (VP-16). She seems to feel at home here and hasn't been upset about being back. Of course, she didn't enjoy getting the dressing on her central line changed and she despises the eye drops. Time will move on and soon enough we'll be done.

We are excited that we have been accepted to stay at the Ronald McDonald house. John or I will sleep there with the other kids each night. It's a very nice set-up, and only 4 blocks from Primary Children's. We have a private room and bathroom. We share a toy room and family room and kitchen. Almost every night and some mornings different groups come in and make dinner or breakfast. Today it was the employees from Banana Republic. I'll have to get the scoop from John on how good they are at cooking. He did say that tonight they had some professional bull riders come talk to the people staying at the Ronald McDonald House and they got autographs and tickets to their show tomorrow. This is getting choppy and it's late so off to bed will go this sleep head.

Acute Myeloid Leukemia: Day one of chemotherapy. Here we go.

Tonight Erin's starts her first round of chemotherapy for her treatment for Acute Myeloid Leukemia. There aren't even words to express our feelings for what we are being thrown into. Mostly we are aprehensive about the chemotherapy.

The ICS (Immunocompromised Servies Unit) ward that we are in is full of children with different types of cancer. It's uplifting and depressing to see all these little bald kids, as young as a 12 month old (he is a cute little bald baby and he was being pulled around the unit in a Little Tikes Wagon when we first saw him). The patients here walk the halls and play with toys in the toyroom. Once on chemotherapy they aren't allowed outside.

It is really something to pass a parent in the unit. Everyone here knows what we are going through because they have all been there. We are all in different stages and it's so comforting to talk to the other parents and hear their stories and hear their words of encouragment.

The doctors have given us a lot of information on the chemo drugs she will be given. This first round will last 10 days. She will take ARAC for 10 days, 2 times a day. She will take Daunorubicin on days 1,3 & 5. She will take Etoposide (VP-16) on days 1-5. These drugs will kill the cancer cells in her blood. She has a list of other drugs for nausea, eye drops, pneumonia (she'll take this for a year to prevent getting pneumonia), pain killers, and a fever reducer.

After the 10 days of chemotherapy we will be here for 3 weeks while her immune system slowly recovers. She will be very suseptible to illness, so please don't visit if you are sick or if you have been around someone who is sick. Even the smallest cough or runny nose could be very bad on our little Erin.

We will be on a 10:00 pm Chemotherapy session. That means that every day Erin has chemotherapy she'll be receiving it at 10:00 pm. This is good because she'll be sleeping through the administration of the drugs (through her central line that was surgically put in place in her heart) and hopefully she'll be able to sleep through the worst nausea. Some of the chemotherapy will take up to 6 hours to administer.

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"