Here is how we found out:

Rylee was getting looked at for the ear infection that had come back (two or three days after the antibiotics she had been on were done) and Laura was asking the doctor about why she was bruising and stuff....she had had some bruises on her legs we thought looked quite large, plus her stomach was swollen yet her appetite had dwindled. Well he
did a blood test and found that her blood counts were low. He called me at work and told me to pack a bag for a couple of nights cause we were going to Primary Children's (in Salt Lake) for the next couple of nights. We get there and they tell us she has leukemia.

We both broke down at the time, since Leukemia is under this all wonderful umbrella of Cancer....so we were both quite worried. After several visits with the Doctors we felt much better. The prognosis in Rylee's case was much better than we originally anticipated.

Rylee has the most common form of childhood Leukemia (ALL...for acute lymphocytic leukemia) plus she is at the most common age (between 2-4) to get this cancer. So since it is the most common, the most is known about it. We are told that there is a 85-90% survival for these children...plus this statistic is based on children diagnosed 5+ years ago. So we are hoping it is even better. For those wondering about the need for bone marrow transplants....well lets hope it isn't necessary. We will only need this if she relapses after the two years of treatment.

Now we hope she is in good hands, our secondary concern is money. We don't have insurance, so this will really cost a crapload. Hopefully we can get enough between Medicaid (if we qualify) and fundraiser's etc...to finance this. As of June 11th we are in about $30,000.00. Whoopee!!

Now on to Rylee's progress:

Originally Rylee had been admitted to the hospital and they did a few blood tests then the next day they did a bone marrow aspirate (like drawing blood, but bone marrow instead) luckily they put her out for this. In her blood she had 53% blasts (short for myoblast, which is the cancerous cell causing the problem) in her marrow she had 91% blasts.

As of June 6th (the last bone marrow aspirate was done) she had less then 1% blasts in her marrow!! This is great news cause if she has less than 5% by the end of her first month they will move on to the next phase of treatment. She also has none in her blood at this time. Of course due to the chemo treatment she loses other fast growing cells also. Such as hair, I had to shave her head on the 7th of June cause it was falling out so bad it was getting in everything. She also has low levels of red blood cells, platelets and white blood cells. They have given her transfusions for the red and platelet levels...but white blood cell have to be created by our bodies. The first 3 weeks she had 0% healthy white blood cells (what they use to gauge this is the ANC count), so we have had to take time off from work to stay home with her. She cannot fight infection due to this, so no one visits currently (well no one really ever did before).

As of June 9th they did some blood work and told us her ANC (Absolute Nutriphile Countl) was up to 300 (this is actually a thousands number) which is better. They want her to be at 500 or more before we take her off of the antibiotic we have been giving her every 8 hrs through her PICC line. (not sure what PICC stands for, but its in her arm..a permanent fixture for the time being).

Normal children are between 1,000 and 5,000 (1,000 being not very healthy) if we can keep her around the 1,000 levels for her ANC's this would be good. She would be able to go out in public without too much worry.

Ok, now on to Rylee herself....as you now know she has lost her hair. She has also gained a lot of weight due to a steroid drug she is on...she is all swollen looking. (mainly gut and face, legs still look like chicken legs) she walks around like a pregnant women. This drug also makes her act like pregnant women...crying at drop of a hat, horrendous mood swings....and she is ravenous ...constantly eating all day.

They tell us this is normal, but it makes for a difficult day. As soon as we get a moment to relax she will want a cracker or yogurt or carrots or mashed potatoes or goldfish or cheese or ...you name it she tries to eat it. The other hard part is the drug she is on gives her insomnia...she sleeps great at night, but wont nap during the day. Even on a normal kid this would be tough.

But all in all we are doing well, I have no doubt that fasting and prayer has assisted a great deal ...I am surprised I have not yet had a panic attack...nor even anxiety which is beyond my normal level...hmm mm. Although that first day was tough.

Anyway's, that is it for now. I may change the layout of this page to make it easier to follow, but decided for now I would at least post the info. Check out her pics and vids also as then you can see her in action and not just go by my somewhat shortened description.

On the 13th I took Rylee for her regular clinic visit and when they tested her blood counts (CBC's as they will be referred to from now on), her ANC count was 200 which was down from her last check

On the 16th our home care representative did another CBC, Laura wasn't home when they called with the results, and I guess the message was hard to here, but the ANC was down to 100 but her platelets were up to 82 which looking at the chart you will see is quite a jump from the 13th.

Rylee herself seems to be doing well, she is about as active as she can be. Although she does tire quickly; the only downsides is that the medication she takes right now make her constantly hungry, moody, cause muscles to ache and she is growing big. The hungry and moody are tough to deal with for whichever parent is home at the time, but the toughest thing for Laura and I is the steroids in the medication causing her to grow big. She doesn't look like Rylee to us, and it is difficult dealing with this child when looking at her she doesn't look like your child. This for us has been the most difficult thing by far, and we feel this is just due to us having less patience for someone else's child than our own. Since she looks like someone else's child we have to try hard to focus on the fact that she is ours. Weird to explain but when you see the recent photos, you may understand better.

Today I'm just putting in a short piece. I went down to clinic today and Rylee's CBC's were real good. This is great because it means she will be taken off the antibiotic that we had to administer three times a day.

We don't know a definate ANC count yet but the preliminary estimate is 1.6 and 1.0 to 5.0 is considered normal. This means we can take her into public should we need to..(although we probably still will have her wear a mask)

This also means she will not have to take the steroid again (at least not in the same way). Later they may have her take it but it will be for like a five day period, not a full month. Laura and I are estatic about this because she will start to go back to the normal Rylee we all love...not this strange chubby kid who we have been taking care of that talks like Rylee.

This week has gone well. Rylee is losing some of that steroid induced weight, she also was in a much better mood from almost the first full day off the dextramethazone. She has been more active this week and not nearly as moody.

We have noticed a slight cough and will be having that checked tommorrow. Our main hope is that her blood counts are still good.

I hope to have some video clips up soon, I would advise those who view them to download to your local system so that it minimizes the traffic on my site. I will try and create a explaination of how to do this for those who dont know. There is a large list of videos that I plan to upload and some are going to be quite large even compressed. I will input more data tommorrow when I have more information on her CBC's.

The last couple of months have been O.K. I have been really busy with school and of course Rylee, and life in general so I havent updated this site like I wanted to.

At the end of July Rylee wen into a couple months of a sort of "Break" period where we only went down once a month and things seemed for a bit almost normal. Her counts were really good and she started to grow her hair back.

Then in the beginning of September they started the next phase of treatment which is pretty harsh. As of our visit last Tuesday (September 27th) she had really low white blood cell counts and most her other counts were lower. She is on a steroid regime again although it is slightly different. The dosage is higher but she only takes it 7 days on and 7 days off. So the effects dont seem to be as bad. But the chemo takes care of that bad part.

For the most part she does O.K., but she does sleep a bit more and her tastes for food are drastically changed during this period. We still have another month to go of it. Weekly visits again also during this time.

WBC:
RBC:
Hgb:
Hct:
MCV:
MCH:
MCHC:
PLTS:
ANC:
Neut:
Band:
Seg:
Lymph:
Mono:
Eos:
Blast:
NRBC:

White Blood Cell count
Red Blood Cell count
Hemoglobin
Hemoatocrit
Mean corpuscular volume
Mean corpuscular hemoglobin
Mean corpuscular hemoglobin concentration
Platelets
Absolute neutrophil count
Neutrophil

Lymphocytes
Monocytes
Eosinophils
Myeloblast

You will notice some links are to the same page, due to the nature of the explanation given on a given site.

This page is pretty complete on CBC's

Here is a PDF describing CBC's