Going, Going, Gone!!!

One of the things that the doctors have asked us to do was have the other boys get there blood drawn to test to see if they would be a good match for a bone marrow transplant.(We probably won't have to do this but they do it just incase) We brought the boys up tonight to have it done. We also were planning to cut off the rest of Critters hair since it was falling out so fast.Since the boys were up here they got to see Critter for the first time since he was admitted, it was so nice to have the whole family together again. As I was cutting Critters hair the other boys thought it would be cool if they did it to, it was realy cool how the boys wanted to do it so they could support Critter. Enjoy!

One good and one bad

Last night Critter had mac & cheese for dinner. I started scooping it onto his tray and found a hair! Gross they served us hairy mac & cheese! Then I found hair in his hands and on the back of his shirt. I realized that he has started loosing his hair. I have to admit I sat down and cried. The realization of it all hitting me. This morning when I washed his hair the sink was full of hair. I decided I wasn't ready to shave it yet but I gave him a trim because it was looking really thin and mousy. It is really uneven! (I am awful at cutting hair)! We will have to have a head shaving party soon.
On the bright side..(literally) we changed rooms! Our last room had blinds that stayed shut. I never knew what was going on outside so I requested some sun. We got a great room with a view of the mountains and the entrance to the hospital. I am entertaining myself by people watching out my window. Yes you can call me the peeper from the window! Last night I watched a man and his daughter that was probably 8 or 9 years old run in and out of the water feature in front stealing the money! I'm so glad they have given me something to do!

Counts ahh ahh ahh!

Last is white blood cells. White blood cells (WBC) fight infection. A normal WBC is between 4.8-10. Another little girl who was just admitted came in with a WBC of 46. When Critter was admitted his WBC was 106! All blood cells are produced in the bone marrow and then sent out into the blood. Leukemia is the uncontrolled growth of immature white blood cells. Because they are immature they don't fight infection like they should. One type of WBC is called a neutrophil. These are in charge of fighting bacterial and fungal infections. This type of WBC makes up 60% of our WBC. We measure this type of WBC by something called the absolute neutrophil count (ANC). A normal ANC is between 3000-5000. In order to get rid of all cancer cells we need the WBC and ANC at ZERO. Today Critter's WBC was .3 and his ANC is 0! We are almost there! But because we have wiped out the stuff that usually fights infection he has no way of protecting himself from infection. If his ANC is below 500 they want us to stay in our room. We can't even roam the halls! But because he is such a high risk of infection they take this very seriously. Critter has finished his last dose of chemo for this round and now we wait for his cell counts to rise. They say we will stay at 0 or close to it for the next few days or even a week and then the counts will rise. This is called count recovery. He should bounce back pretty quickly this time, I have heard that every time the body takes longer to bounce back and every body is different so we have to wait and see what he does. Sorry for all the technical stuff but its hard to explain whats going on with out it. We watch the labs religiously because they tell us how our little boy is doing on the inside.

Platlets and Oreo's

We already talked about the red blood cells next is platlets. Platlets are the things in our blood that help our blood clot. When platlets are low you get bruises, your gums may bleed and any bleeding you do have wont stop. Normal levels for platlets are above 150 (thousand). When Critter came in his platlets were 28. When platlets are low they transfuse. Critter has recieved 5 platlet transfusions since we arrived. Today his platlets were 8 so the transfused. They let this get pretty low before they transfuse as long as he is in the hospital, not going for a procedure or bleeding at all. Before his LP's they like his platlets above 50 so they usually transfuse him to get the numbers there. This is a pictue of Critter eating Oreo's. Even though his blood counts keep falling he still has an appetite! The longer we can keep him eating the better!

Blood

This is a picture of Critter getting blood! Let me explain what the Hematocrit is and how it work. In our blood we have red blood cells, white blood cells and platelets. Red blood cells carry oxygen throughout our bodies. So if we don't have enough we will be tired, pale and may be requiring oxygen. This is measured by our hematocrit (Hct) level. Your hematocrit is the percentage of red blood cells in your body. Normal is 35-40%. When I had Critter I went into the hospital with a Hct of 38 after I had him my Hct was 31. I was exhausted. I slept for days to make up for it. When Critter was admitted to PCMC his Hct was 17! Because the cancer cells are producing so quickly and there are so many the body has no room or energy to produce regular blood cells. I used to brag about what a good napper he was...well now we all know why! So when the red blood cells are low they transfuse. Because cancer patients are used to functioning on a lower Hct their bodies have compensated for this and Critter functions very well with a Hct of 25-30! Even though the cancer should be gone or almost gone by now the chemo will kill red blood cells too so they watch his levels and when he gets low they give him more. His Hct came back at 20 the other day and he was starting to require O2 while he was awake so they decided to give him blood. This is his second transfusion of red blood cells since we have been here. The only problem is it gives him so much energy! He doesn't go to sleep until midnight and wakes up early! The night before his transfusion he slept all night! I knew when the nurse came in at 8:30 and we were still asleep that his lab results were back and he would need blood!

What matters most

I spent 3 nights and 4 days at the hospital this week. It was long and trying. I loved the time spent with Critter and felt bad when I had to leave. I left him with Jason's mom for the night so me and Jason could have our first night together since this all started. We took the other two boys and went to dinner then we came home and started on Luke's reading homework for the night. All four of us laid in my bed and read poems from A Light in the Attic. I relished every second. I didn't realize how much I had missed my other children and how good it felt to hold them in my arms. Life's simple moments are the most precious. I am forever indebted to our wonderful Heavenly Father for the incredible gift of family. Even while laying there together enjoying my husbands and my two boys company I still felt a feeling of loss, a piece missing. Our family is not complete without Critter. I can't wait until Critter can come home even if it is for a short time. You can't go through something like this without re-prioritizing. Family is the one thing that would be unbearable to loose. I have lost my schooling , I have lost my sleep, I may loose my job, I have lost my daily routines, I have lost my exercise plan, I have lost my time, I have lost my summer and with it my vacation to Disney Land, I have lost my waist line (again) but my family, not just immediate but extended as well, has grown in strength and purpose and I feel richer because of it. As a humbling experience like this can do we have all been reminded what matters most in our lives.

Hello from room 22

Sorry we haven't updated sooner! Our results from our last LP came back and we are down to 17% Yeah! We had another LP today and I hope to find the spinal fluid clear of cancer. I will get the results in a few hours. But we have also had some excellent news...the results from the bone marrow biopsy came back and we are low risk!!! Critter has what they call an inverted chromosome 16. This occurs in about 10 - 15% of people and is even rarer in children. The doctor says this is an oncologists dream. This chromosome apparently responds really well to chemo and has a great cure rate! So as long as he responds well to treatment we will not have to have a bone marrow transplant! We are so excited. We feel very strongly that we got these results because of the prayers and fasts of all of our friends and family. Words don't express how thankful we are for everyone.

NPO

So we are going for another LP today. We are scheduled for one o'clock. They tell us he needs to be NPO which means nothing by mouth in other words he can't eat until after his LP because of anethesia. So at 8am he had a bottle and it is now 12 and he is starving. I brought in my oatmeal for breakfast and he got really excited until I fed myself instead of him. He screamed for a while until I decided to sacrifice a box of kleenex. He played for a while then fell asleep for about 10 minutes but all the nurses had to come in and see him folded over asleep in all his tissues!

Goodnight!

Critter is waaaaay off his regular schedule. He was up until 12 o'clock last night just playing with anything he could reach. As you can see it is a little tricky to get him to lie down and go to sleep in his crib when there are so many fun things just outside his crib.

A good day.

Today was probably the best day we have had all week. Other than his central line still bleeding a bit we don't have anything bad to say. Critters counts are dropping wonderfully, when we came in his white blood cell count was 106,000 and today we found out that they are at just under 6,000. This means the chemo is doing its job well. After a bag of new RBC's our friends came by and we took the new walker out for a test drive. Critter doesn't quite get how to make it go in the right direction yet but it was nice to get out of our room.

After the first day Critter would cry whenever anyone that looked like a nurse or a doctor would come near him, this includes Anne one day she came over from work. The staff here is absolutely phenomenal and they are so sweet with him that today he was actually playing with his nurse and tech. Its so nice to see him adjust well to these people because you can tell that the genuinely care for him and his well being. All and all it was a pretty good day here in the ICS, I hope you enjoy the pics.

A new toy to keep up with Odette.

Good morning from room 22. On our first day here we met a little girl named Odette(she is the little girl in the first pic. Her counts are dropping so that's why she has the mask on.) She has been sick since she was 6 months old and is now about 17 months. She is a little bundle of energy and happiness. She has a walker the she scoots around the unit in and her mom can hardly keep up with her. it is a great comfort to know that they kids do get used to their life here in the unit and the are happy even while they are going through so much. Anyways, we would like to thank Heather for Crids birthday present a new walker, he will enjoy it so much. The other pics are just random for people to see.

80% Ugh!!

On Wednesday as we said before Critter had an LP done to check the amount of Leukemia cells he had in his spinal fluid. The tests came back today and he had around 80% of the cells tested positive for Leukemia, that's not so good. Due to the results we now have to have an LP twice a week so they can inject the ARA-C drug directly into his spinal column so it can work faster. They say it usually takes two weeks of this to clear it out, so wish us luck on that. As enjoyable as the LP is Critter has a problem with being put under. His tonsils and his tongue are swollen so as soon as the drugs take effect he cant breath, this just adds another uncomfortable step to the process so he is very uncomfortable the rest of the day.

On a lighter note his cell counts are all dropping well(this is a good thing, we want them to be gone so we can grow new clean cells). He also got to spend time with grandma today. I don't think he realised it but she was very happy for the time. We are so lucky to have both of our wonderful mothers here to help. They have both been so amazing throughout this whole ordeal. In fact we have been so blessed with such great family and friends and we know that we couldn't do this without you guys.

The tour.

Here is the long tour of our room. Enjoy!

Quasimoto

This is Critter right now. I know he looks aweful and I am embarrased for him that I am posting this but we might as well document. He has to be really hydrated in order to recieve the chemo. If it sits in his system it can be extremly damaging to other tissues. They need him to empty his bladder often. Also when you start the chemo it will break apart the white blood cells releasing toxins into the blood. He needs a ton a fluid flush this through his system. He also need basic replacement electrolytes to help balance out the acidic white blood cells. So he is way overloaded with fluid. They say once his white cell count goes down they can back off the fluids until then we are calling him Quasimoto. This picture was just after his first hospital bath! He loves to brush his hair.....for now.

Chemo! Dun, dun, dun!

This is a picture of how the nurses dress just to put the chemo on the IV pump! Its such nasty medicine everyone takes tons of precautions to protect themselves. So sorry if I bore you but I want to document his drugs just for a diary. The first day of chemo is called Day 1. We started last night at about 11:30 so last night is Day 1.
The first drug is called Ara-C this is an IV push every 12 hours X10 days. This drug is the backbone of the chemo. Kids with ALL will only get a few doses of this or none at all. With AML its the main drug. It has really good penetration into the spinal fluid, which we know from his last LP (lumbar puncture or spinal tap) that he already has leukemia cells in his spinal fluid (not a good sign but its one we can fix). He will be getting LPs done twice a week with Ara-C pushed directly into the spinal column on top of the scheduled q12hrs X10 days. So lots of this drug.This drug can really irritate the eyes and cause infection. So we are getting eye drops every four hours to prevent this. Critter hates this the most.

The next drug is called Daunorubicin. This will be an IV drip given over 6 hours. This will be given on days 1, 3 and 5. This drug is one of them that is responsible for hair loss. They say in about 2 weeks he will start losing his hair. Oh well bald boys are cute! We plan on shaving it when it starts to fall out.

The next drug is called Etoposide. This is IV drip over 4 hours. He gets this days 1 through 5. This drug (as well as all the others) will cause nausea and vomiting, sores in his mouth and a drop in blood pressure. So they check blood pressure at least every hour, most of the time more than that, when this drug is going in. We are waiting for mouth sores they say it might be a few weeks or not until he has has a few rounds of chemo before they will appear. He might not want to eat so if that happens they will start feeding tubes, but we will cross that bridge when we get there. For nausea he is on Zofran(my favorite drug) every 8 hours and Benadryl (I guess this works great as anti-nausea drug for kids) every 4 hours. There is a long list of stuff they can give him for nausea but these two seem to be doing the trick for now.

The last drug is called Gemtuzamab and this is only on day 6 and has all of the same side effects as the other drugs. So there is our long list of mean meds that are going to kill the cancer! Wahoo for modern medicine!

See ya in 6 months

So chemo has started! So the type of chemo Critter is getting is intense. These are some mean drugs. We have to wear gloves when changing his diaper or dealing with any secretions because the chemo will come out in urine, vomit and other fluids and could harm us, especially our skin cells. With the start of chemo the doctors and nurses have talked to us soooo many times about infection. With his blood cell count so low he is at a huge risk for infection, a common cold can mean the difference between life or death. Because we want to take every precaution to protect his health and his life we are not accepting visitors at this time. In fact we have limited visitors to 4 people only. Jason, myself and our mothers. The best way to support us is from home! We are working on a schedule of babysitters and will be sure to ask from anyone that every said "if we can do anything" so be expecting phone calls. Thank you for all the support and love we have felt from home. We have been overwhelmed by every ones thoughts and prayers! Thank you for all your support!

Happy Birthday!

So for Critter's birthday he got a new central line! We figured this is more than we usually spend on the other kids so we can't feel too bad. The central line is a line that is placed into the superior vena cava, a large vein that enters the heart. This will serve a few purposes. 1. He will no longer have to have an IV. IV usually only last around 3 days and can become sluggish this goes into a bigger vein and will not go bad like an IV. 2. They can do blood draws off of this line. He is going to have blood drawn to test blood levels at least once a day and this line will save him pokes. 3. The chemo drugs are incredibly toxic especially to tissue so with a central line there is more control of exactly where the drugs will go. The central line does come with a few risks. If infected it can be more serious so it is important that we keep it really clean and use sterile technique on any dressing changes. But all in all the procedure went well and hopefully it will be a great benefit for us.

Acute Myloid Leukemia (AML)

The verdict is in. Critter was diagnosed with Acute Myloid Leukemia or from now on just AML.UGH!!! There are two main types of Leukemia, the most common in kids is ALL or Acute Lymphoblastic Leukemia and AML. Forgive me but I am not a doctor and am still learning about this disease so I am just going to cut and paste a defenition from the American Cancer Societies website.
So here we go:


What Is Acute Myeloid Leukemia?

Acute myeloid leukemia (AML) goes by many names, including acute myelocytic leukemia, acute myelogenous leukemia, acute granulocytic leukemia, and acute non-lymphocytic leukemia. "Acute" means that the leukemia can progress quickly, and if not treated, would probably be fatal in a few months.

AML is a cancer that starts in cells that would normally develop into different types of blood cells. Most cases of AML develop from cells that would turn into white blood cells (other than lymphocytes), but some cases of AML develop in other types of blood-forming cells. The different types of AML are listed in the section, "How is acute myeloid leukemia classified?"

(Acute leukemia that develops in lymphocytes is called acute lymphocytic leukemia (ALL). For more information on this type of leukemia, see our document, Leukemia -- Acute Lymphocytic.)

AML starts in the bone marrow (the soft inner part of the bones, where new blood cells are made), but in most cases it quickly moves into the blood. It can sometimes spread to other parts of the body including the lymph nodes, liver, spleen, central nervous system (brain and spinal cord), and testicles (in males).

Other types of cancer can start in these organs and then spread to the bone marrow. But these cancers that start elsewhere and then spread to the bone marrow are not leukemia.



Did it all make sense? It still doesn't to us but we're getting there. For each type of Leukemia there are sub types and stages. To find out the stages they will do an initial bone marrow biopsy and then we'll know in about two weeks how much if any extra treatment is required. We'll talk more about treatments tomorrow.

Welcome Home

I will say this, we are so blessed to live so close to a world class facility like Primary Childrens Hospital but its like the flotation devices on an airplane you don't want to use them!!!! Through the sobs we managed to get our affairs in order and drove to the hospital. When there we were checked in and taken to the I.C.S. (Immunal compromised systems unit) and as we are walking in one of the volunteers greets us and says "Welcome home". I have never wanted to hit a women so bad in my life, I thought that was the worst thing anyone could have ever said to anyone in any situation. Didn't she know that we were only going to be there for just a few days and would never come to think of this place as home. Well? Didn't she?

Over the next few hours we had a few textbooks worth of information regurgitated on to us and I slowly began to know what that volunteer meant. They drew a few more labs so they could determine what type of Leukemia Critter had, placed an I.V. and told us that we would have a diagnosis in the morning.

The begining!

So it has been a rough few months at the Groscost house. Critter has had on and off ear infections since February and just hasn't been his happy cheerful self. In March we finally had tubes put in his ears to help with the infections. This helped a little and we just thought it would take a few days or a week to get his cheerful disposition back. Well it never came!

Three weeks after the tubes he seemed to be getting worse again so Monday morning Niki took critter in to see our pediatrician. After what seemed like another "It just might take some time" visit our doctor said he would check the iron levels in his blood. Five minutes later they were on their way to get a C.B.C. test.

I will never forget the sound of Nikis voice when she said I needed to come home immediately. She said our worst fears were confirmed Critter has cancer and we were on our way up to Primary Childrens Hospital.