Good News - At Last!

CJ was released from the hospital yesterday afternoon. He was very happy to be home after staying 2 days in isolation (no play room, no "slushy room" and no walking the halls). The docs let him come home after several tests that showed CJ did not have a bacterial infection. This was certainly welcome news! And it gets even better...CJ's ANC when he left the hospital was over 1000!!!

I should probably explain the "slushy room". There is a room on 7 West that is actually named the Family Room. It is furnished with television, 2 computers, a stove, sink, fridge, dining room table and chairs, and comfortable couch and chairs. It also has 2 slushy machines where parents can access slushies for their kids (or themselves if they like). CJ likes hanging out in the "slushy room" because the hospital staff doesn't go in there. They won't come in the room to administer any type of treatment so CJ has come to use it as his haven.

We've told you about the mood swings the steroids cause. CJ was in a great mood last night. We stopped by to bring dinner to Greg and Sheree after they got home. And Sheree wanted to spend some time with Hunter who has been staying with us. CJ was having too much fun giving Aunt Gretchen (Greg's sister) my sugars! (We have a little thing where CJ stores his sugars for me just behind each ear. He lets me steal some from one ear, then turns his head so I can get the ones on the other side. Every now and then, he lets Gretchen have some of my sugar and I have to remind him that he makes those for me. He loves the game and he loves seeing me fight Gretchen for them.) It was so good to see him laugh and hear that giggle. We've missed that over the past few weeks.

I think things were a little easier on him at the hospital this time, too. No shots! That was a common mantra when he first arrived on Friday. By Sunday I think he finally believed us when we told him we were done with the shots - he didn't have to worry about them any more. And he told us how he is taking his medicine now without fighting Mommy every step of the way. We made a big deal out of this hoping he will continue his good behavior.

After today's chemo treatment - more good news!

Today, CJ went to the clinic for his regular chemo treatment. There was a scheduling error so he did not receive the planned lumbar puncture today, which was really a shame because he had to go 8 hours with no food or drink since they expected to sedate him for the test.

Next Monday will be his 28-day test so he will receive the lumbar puncture and a bone marrow test. These tests will tell the docs whether the chemo is effectively beating the leukemia. If the leukemia cell counts in the bone marrow are still under 5% (as they were a couple of weeks ago) the leukemia will be considered to be in "remission", meaning that the chemo is winning. This does not mean that CJ is healed. He will still have to continue through the next phases of the treatment. If I understand correctly, these tests will let the docs know if he is ready for the next step or if they need to continue this induction phase of his treatment program.

Now for the best news of the day - his ANC is up to 2200 today!!! The doctors are very pleased with anything over 1000, but they will remain cautious since these counts can drop as fast as they rise.

We want to thank everyone for your prayers and good wishes. We feel your support and are so grateful that you are keeping CJ in your thoughts. We also want to thank everyone for your donations to CJ's fund and also for the food donations. Having dinner on hand really helps Sheree to focus just on CJ and what he needs at the moment.

CJ and I have worked on making some "Thank-you" cards. I'm sorry, we've been a little slow getting these into the mail. Please know how grateful we are for your support!

Re-admitted to 7 West

Yes, unfortunately, it's true. We're back in the hospital. CJ was admitted to 7 West this morning with an infection. We expect that he will remain here a couple of days, depending on how quickly he reacts to the antibiotics.

The doctors are being very cautious with this infection because CJ's ANC is below 500 so his body has very little ability to fight off infection on its own.


We will keep the blog updated as more information is available.

Latest News

Yesterday was CJ's regular weekly trip to the clinic for his chemo treatment. With an early morning appointment, this trip was shorter than the last. CJ's ANC was 300. For some perspective, a normal ANC is greater than 2500.

I've "borrowed" a paragraph from ViviAnne's blog that my niece, Stacey, put together explaining ANC. (Stace, I hope you don't mind!) Please see below:

ANC stands for Absolute Neutrophil Count and refers to the total number of neutrophil granulocytes present in the blood. Neutrophils serve as the major defense of the body against acute bacterial and certain fungal infections. Neutrophils usually constitute about 45 to 75% of all white blood cells in the bloodstream. When the neutrophil count falls below 1,000 cells per microliter of blood, the risk of infection increases somewhat; when it falls below 500 cells per microliter, the risk of infection increases greatly. Without the key defense provided by neutrophils, people have problems controlling infections and are at risk of serious complications.

With CJ's ANC so low, he is expected to be isolated from any exposure to bacteria, viruses, colds, infections. Obviously, this means that he is home-bound except for visits to the clinic or hospital.

Speaking of the hospital, after his chemo treatment on Monday, CJ was sent to Kosair for an ultrasound of his left arm. This was one last test to rule out a blood clot causing the pain and discomfort to his arm. Once the test was over, it was back home for more grilled cheese and a nap.


Ugh, One More Test, One More Trip to Kosair

Well, now it's Tuesday and we've received the ultrasound results - no blood clots - Yeah!!! But, when viewing the ultrasound, the docs couldn't see the end of the tubing on the port. So, you guessed it, one more trip to the hospital - this time for an xray. Sheree and CJ headed off this afternoon while Greg stayed home with Hunter.

As we've learned from Brent and Kristen, you just never know what ordeal you may have to go through when you show up at the clinic or the hospital. Once they arrived at the hospital, Sheree was told that they had to access CJ's port to run dye during the xray. Since they couldn't do that in the radiation department, they had to go across they street to the clinic and have them access his port. Then back to the hospital for the xray. Once the xray is over, it's back across the street to have the clinic remove the "straw" from the port. Poor CJ is suffering from joint pain in his legs as a side-effect of the chemo treatment so Sheree ended up carrying him back and forth! Next time we will know to find a wheel chair instead.

The result was good - the xray showed that the port was fine. Even better, no more shots of blood thinner!!! CJ isn't believing us yet. Every time someone walks into the house he thinks they're there to hold him down for his next shot. It breaks my heart to think of the torture that must be for him and the kids.

So unless something eventful happens over the next several days, we will probably have nothing much to report. He is not due for another treatment at the clinic until next Monday. They will do another lumbar puncture at that time and as always, will be checking his ANC. Here's hoping we will see his numbers come up!

The Music Therapist

During CJ's last stay at the hospital some of his favorite moments were going to the play room and visiting with the music therapast. She put together a fishing game that CJ particularly enjoyed. Here are some pictures of those visits.

Home Again!

CJ was released from the hospital yesterday. After a long afternoon of waiting - for paperwork or whatever - they finally arrived home around 7:00 PM.


We have test results!


The CT scan did not show any clots, but they are not yet ruling one out completely. There is one more test they want to run, but they will do that Monday during his next trip to the clinic for his chemo treatment. This test will be another scan, but only of his arm. They will run dye into his veins and look for any kind of blockage in his left arm.

We've also received the results of the bone marrow aspirate and spinal tap that they did last Monday. The purpose of these tests is to monitor the effects of the chemo. When CJ was originally admitted to the hospital the concentration of leukemia cells in the bone marrow was 93%. The goal is to reduce this count to below 5% in the first 28 days of treatment. CJ's count in his last bone barrow test was indeed, less than 5%, but the doctors have advised that it is too early to be too excited by this good news. The important thing is that these counts remain below 5% at the end of the first 28 days. What these results do tell them is that the treatment plan appears to be working. CJ's bone marrow is now beginning to produce it's own cells again. The question is whether or not his body will continue to produce the leukemia cells (immature white blood cells) or whether it will produce them in such low amounts that the chemo can keep them under control. That's what the next test will tell . (I am probably not explaining all of this with technical accuracy. And I hope what I am saying is not misleading. This is my understanding of what is happening, so forgive me if we find out later that I was off base.) -
The spinal fluid test came back clear of any leukemia cells. They will continue to monitor this throughout the treatment program so they can catch any developing cells in the central nervous system

About those steroids...

Steroids are used in combination with the chemo to kill the leukemia cells. This treatment itself is not too bad - CJ takes a liquid dosage by mouth several times a day. The effects of these steroids on his body - mood swings and incessant hunger make this one of the dreaded phases of the treatment.

CJ is beginning to "puff up". This is not puffed up as in bulk and muscle like an athelete. His little cheeks are getting puffy and his little tummy is really pooching out there! He can't get enough to eat. Last night as he was finishing off a large plate of "hot cheese" he asked for cheese sticks. While Sheree was heating the oven to make the cheese sticks, he decided he couldn't wait and needed a peanut butter and jelly sandwich. He ate them all - the hot cheese, PB & J sandwich and the cheese sticks!

Today his food of choice was more hot cheese, corn dogs and grilled cheese sandwiches. I know I made him two sandwiches and I have no idea how many Sheree made during the day. He won't eat the crusts, so Hunter is enjoying the cast-offs. We chuckled a little that we think Hunter can keep up with CJ in the eating department even without steroids. Let me tell you, that little one can pack it away!

C jdid not feel well at all today. He didn't have the energy to do much more than lie on the couch and watch videos. He tried to play a little Wii, but just couldn't stick with it for very long. He and Mommy were able to take a good nap, though.

He is taking a long list of prescription meds including laxatives that are keeping him running to the potty. The vinchristine (chemo treatment) he gets on Mondays causes constipation so they keep him on laxatives during the week. It made for a very miserable day for him today.

On top of everything else, he has to take two shots of blood thinner each day - one in the morning and one in the evening. Sheree has been taught to give these shots to him in his thigh. I was Mommy's helper this evening and I'm not ashamed to tell you that I cried worse than he did. I'm pretty sure that wasn't the kind of help Sheree needed, but there was just no controlling myself. I headed to the livingroom in tears, trying to hide from both Sheree and CJ. There's something so wrong about a mother having to do that for her child!

Sheree found me in the livingroom and told me that after I left his room, CJ looked at her and asked her to give him the shot slow - not too fast. I'm coming apart at the seams over it and he didn't even know she had already given him the shot. I guess I diverted his attention after all.

Hopefully, tomorrow will be a better day. He still has to endure two more shots, but we are hoping the laxatives will have worn off and he will be more comfortable during the day. The next big concern is how they are going to get through Sunday night and Monday morning when CJ can't have anything to eat before his next scan.

Nothing Much to Report

I just wanted to give everyone an update - such as it is...

Unfortunately, we don't have much more information than we had last night. The results of CJ's brain scan came back clean so he was started on blood thinners during the night. He had his other scan today and we are still waiting on results. In fact, we're still waiting on results from Monday's bone marrow and spinal tap. It certainly can be frustrating - all of this waiting!

Sheree was hoping this stay would be a short day or two. We'll keep our fingers crossed, but I fear it may take longer to regulate the blood thinners. They did give him platelets today. From what Sheree tells me, this is because of the changes to his blood due to the thinners.

I'll probably just add to this post later - once there is more to report.

Back to 7 West

CJ went to the clinic today for a blood check and was re-admitted to the hospital. His counts are still low, but not low enough to require more transfusions. Actually, they are better than when he left the hospital on Monday, which is a good thing, but there has been a new development.

We noticed on Monday that he was favoring his left arm. He complained a little that it was hurting him. We wondered if it may have been somehow related to the fracture he received a couple of months ago, but an x-ray ruled that out. We also considered that he may be feeling the effects of the chemo which will cause joint pain, usually in the hips and legs. The doctors were concerned that there was a problem with his port so they wanted him back in the hospital for more tests.

They suspect that he may have a blood clot. Apparently, this sometimes happens when a port is inserted. They will run some sort of scan tomorrow that should verify that there is a clot. He will be sedated for this test. In the meantime they ran a CT scan of his brain this evening to rule out any bleeding there. There is no reason to suspect that there is, they just want to rule that out before starting him on blood thinners. Their plan is to start him on those later tonight after they've received the results of the brain scan.

I'm sorry, that's about all the info we have at this point. I will post another update as soon as we know more.

Please keep our little guy in your prayers.

We're Home!

CJ was released from the hospital late yesterday afternoon. He is very happy to be home! So are Greg and Sheree. Papaw Bob and I stopped by for a brief visit just to check in and see if anyone needed anything.

CJ's color looks pretty good, but he still has those dark circles around his little eyes. He was in good spirits and happy to be racing again on the Wii. (There was a Wii at the hospital but it didn't have his favorite Mario racing game.) He tires easily. After two rounds of racing he ate a little "hot cheese" (CJ's term for mac & cheese) then went to lie down and rest. Of course, he needed Mommy to lie down with him. He rarely lets Mommy out of his sight and I don't blame him.

Greg left to make the first trip to the pharmacy and returned with a grocery bag full of prescriptions. I can't imagine keeping up with this treatment regimen.

We don't yet have the results from yesterday's bone marrow and spinal tap. The doctors are still a little concerned about CJ's blood counts. The let him come home today without the test results, thinking he would be more comfortable there and he can forego the every 4-hour temp and bp checks. The doctors want to see him at the clinic tomorrow to check his blood levels again. We're hoping they will have the results of the bone marrow and spinal fluids by then.

We will keep everyone posted as things evolve. In the meantime, we want to thank everyone for their prayers, well-wishes, food and contributions. Your outpouring of love and their faith in God form the foundation that gives Greg and Sheree the strenghth to keep moving forward.

Coming Home? - Maybe!

Today may be the day we've been looking forward to for over a week now. CJ may get to come home today. Everything is riding on two tests - a bone marrow check and a spinal tap. Depending on the results, he may be home by this afternoon.

Once he is home we will still have to be vigilant about exposing CJ to viruses or infection. Aunt Christy and Ganny (Sheree's mom) have been cleaning the house in preparation.

CJ's blood counts have been low so he received additional blood and platelet transfusions yesterday. Once he is released from the hospital he will make weekly visits to the clinic to receive his chemo treatment.

In addition to chemo, CJ takes large doses of steroids each day. These drugs work in conjunction with the chemo to kill the cancer cells. They come with some side-effects that may be a little hard on CJ and the family. We expect his little body to begin to swell. He may have an insatiable appetite. His sleep patterns will be affected. He will be sleepy, but won't be able to settle enough to fall asleep. Once the hunger sets in, it will be hard for him to have the feeling of being satisfied. Sheree will have to monitor his food intake so he doesn't gorge himself. Each child seems to have his or her own favorite food during this treatment. For ViviAnne it was mac & cheese. She couldn't get enough of it. CJ so far is showing a preference for McDonald's sausage, hashbrowns and chicken nuggets. Greg has been making 6 - 8 trips a day to the McDonalds on the first floor.

In preparation for CJ's homecoming Papaw Bob and I have stocked the fridge with sausage patties, hashbrown squares, chicken nuggets and ketchup - everything gets doused in ketchup!

I'll post another update once we know the results of today's tests. Here's hoping we are on to the next stage - outpatient treatment!

A Post From Mommy...

The last week has been fog to begin with, followed by the reality that life is just not fair. My life has never been easy, and I believe I am a stronger person because of it, but this week makes me wonder how much a person can handle. I have read the blog and talked to ViviAnne's parents, and heard how they went through three months of tests before they were told it was cancer. I have seen this same thing on TV - test after test and finally they find the cancer. I thought this is how it worked. Well I am here to tell you that was not the way it was for us.

I picked CJ up from his dad's on Thursday afternoon. CJ had been sick for over a week. It was strep throat - I was told it was just strep throat. We had him on antibiotics and he was getting better. He was still a little pale, but he was eating and playing again. When I got to his Dad's CJ looked pale. His dad told me he hadn't wanted to eat and had just slept most of the three days he was there.

I took him home and fixed dinner while he just sat in the chair and watched cartoons. Then I took his temp, 102.5, so I called the doctor. They just happened to have an appointment in 15 minutes. They tested for strep throat again, and the flu - both tests came back negative. Our doctor wanted a blood test to be on the safe side. He said he would call us when he got the results, which would probably be tomorrow.

We went to Harrison Co Hospital to get the blood test, then home. CJ went right to bed, and Hunter went to bed shortly after that. As I was cleaning up the dinner dishes the phone rang. It was the doctor's office. CJ was very anemic. We needed to go to the ER and retest just in case it was wrong, but if the test wasn't wrong something needed to be done tonight. I was in tears - my poor little boy. What was wrong with him?

Greg's mom came to watch Hunter. Greg, CJ, and I went to the hospital. All they could tell us at the ER was he is a very sick little boy. But how sick, no one would say. The doctor came in and let us know they had to put IVs in him, at least two. They started running antibiotics in him, a total of four. Then they had to give him blood. But still all they would say is that he is a very sick little boy, and they had an ambulance on the way to take him to Kosairs. The doctor who was working past his shift now, told us he was coming in the ambulance with us. Now I am scared. I was worried before, but they don't want to take a 30 minute ambulance ride without a doctor. That scared me! All I could think is two weeks ago I had a perfectly healthy, active four year old boy.

We get to the Kosair's ER, and that is when we hear it. "We are 95% sure it is cancer. We have to test the bone marrow to find out for sure". By this time it is after 1 am on Friday morning. And I come apart and pull myself back together every time CJ slips in and out of sleep. He is scared enough, he doesn't need to see me cry.

From the ER we go to ICU and do the bone marrow test, and get more blood. I ask how they know it is cancer and not something else? Well in a lot of cases only the white cell count, or the red cell count is low so that could mean lots of things. But in CJ's case not only are the white cell counts and the red cell counts low, so are the platelets. That points to one thing. Now we are getting moved to 7 west. I have heard of 7 West before. That is where ViviAnne goes when something is wrong.

Now that we are up in our room on 7 west they have put in a port and do a spinal tap. Doctors, nurses, therapists, the hospital chaplain, the clinic nurse, child life and everyone else is just coming in and out of the room. I am getting information thrown at me, and they all ask if I have any questions. I have no idea what I am dealing with so how do I ask questions? All I want to know is, why my kid?

On top of all this I realize I can't go to work while he is having treatments. He can't go back to school for a couple of years. We just lost one of our incomes and are going to have tons of medical bills coming in. This is just too much for one family to handle at once. As the days go by and I learn more and more each day the fear is filled with knowledge. I am still scared to death, but at least I know what to expect.

A Special Visit

I'm sure anytime a family receives news that their child has this devasting disease they go through a moment of absolute disbelief. You just can't imagine that this beautiful, seemingly healthy, child could be stricken with such a horrible illness.

As we were sitting in the ICU hearing the doctor's words, I could only think, "this is just not possible!" The first call I placed was to my sister, Kim. I knew she would understand exactly what was going through my mind. I could see the faces of the people around us, I could hear the words, but I just couldn't put things in place. I literally could not breathe. I wanted to be strong for Sheree and Greg. I couldn't let them see me fall apart. How we ever got through that morning I'll never know. I don't want to re-live it to try and figure it out!

Kim and I were born 15 months apart. I was the oldest and she was the second of six. We've shared just about everything during our lives, from a bedroom & childhood illnesses to our own weddings & pregnancies. We've been through the weddings of our children and now are having grandbabies together. But as Kim said to me that morning, "this is something we were not supposed to share."

Kim's 3 year old granddaughter, ViviAnne Grace Bohannon, was diagnosed with ALL in July of last year. She is 8 months into her treatment program. She has been through the first two phases of treatment and is now in the maintenance phase. ViviAnne had just left the hospital a few days before CJ was admitted. (Believe it or not, she was in room 738 during her last stay there - the room CJ is in now.) She was hospitalized while she recovered from a bout of RSV, a respiratory virus. This is a dangerous illness for a cancer patient undergoing chemo treatment so the doctors take every precaution.

Since ViviAnne had been ill, her counts have been down for the past few weeks and she has been unable to receive her regular chemo treatment. She had an appointment on Friday to have her blood checked. Her counts were back up so she was able to recieve her normal treatment. The clinic where ViviAnne receives her treatments and where CJ will receive his is located just across the street from Kosair. So, on their way home, ViviAnne, Kristen (her mommy) and Aunt Kim (her grandma) stopped by to check in on CJ.

The doctors and clinic staff are all aware of the connection between ViviAnne and CJ so they gave ViviAnne a message and a sucker to take to CJ. The message was - the doctors are nice, so CJ should let them look in his mouth. The sucker was just for fun.

We were a little concerned that they may not be able to come into CJ's room to see him since he had been in isolation since Monday because of his mouth sores. But since he finally agreed to let the docs have a peek inside his mouth and it was so much better, he was removed from isolation and ViviAnne was allowed in his room.

ViviAnne saw immediately that CJ had a port. She showed him hers and he let her look at his. He was a little surprised that she "looks like a boy". ViviAnne began losing her hair in the early stages of her treatment. She finally lost the last of it just before Christmas. CJ hasn't seen her since then. I don't think he really understands yet that he will soon lose his. I'm hearing rumors of a head-shaving party at the hands of Aunt Christy soon after CJ comes home from the hospital. If you are interested in participating, I'm sure Christy has plenty of razors!

If you would like to know more about ViviAnne and her diagnosis here is a link to her blog:

http://www.viviannegrace.blogspot.com/

A Little Bit About ALL

Acute Lymphoblastic Leukemia (ALL.) is a cancer of the white blood cells, the cells in the body that normally fight infections. Leukemia cells are abnormal cells that cannot do what normal blood cells do. The abnormal cells are immature white blood cells that cannot help the body fight infections. For this reason, children with ALL often get infections and have fevers.

Children with ALL frequently have low amounts of health red blood cells and platelets. As a result, there are not enough red blood cells to carry oxygen through the body. The patients may be anemic and may look pale and feel weak and tired. When there are not enough platelets, patients bleed and bruise easily.

Leukemia cells travel through the body. In ALL, the abnormal cells may collect in the brain or spinal cord. In boys, leukemia cells can also collect in the testicles and cause swelling.

Little is known about the causes of and risk factors for childhood ALL. Scientists know that ALL in children occurs slightly more often in boys than in girls and in white children more often than in black children. However, they cannot explain why one person gets leukemia and another does not.

Certain factors affect prognosis and treatment options.

• Age and white blood cell count at diagnosis.
  CJ’s age (4 yrs old) and low white cell count are working to his advantage.
  
• How quickly and how low the leukemia cell count drops after initial treatment.
  The initial treatment usually takes up to 28 days so we won’t know the answer to this for awhile yet.

• Gender and race.
  ALL occurs in boys more often than girls and the treatment program for boys is typically longer than for girls.

• Whether the leukemia cells began from B lymphocytes or T lymphocytes.
  The sub-type of ALL that CJ has is pre-B cell. It is my understanding that this is the most common and most treatable sub-type of ALL and ALL is the most common and treatable form of leukemia.
  
• Whether there are certain changes in the chromosomes of lymphocytes.
  A sample of cells retrieved from CJ’s bone marrow are being tested now. It will be another week or more before we will have the results.

• Where the leukemia has spread to the brain and spinal cord.
  CJ had a spinal tap last Saturday. The doctors were encouraged that the fluid sample they took was clear – not cloudy. Their initial report was good – they found 2 white blasts and 2 red blasts. They expected the lab report to come back negative for any cancer cells in the spinal cord or brain.

• Whether the child has Down syndrome.
  CJ does not have Down syndrome.
  
  
  Treatment Plan
  
  The earlier ALL is detected, the more effective the treatment. The aim is to induce a lasting remission, defined as the absence of detectable cancer cells in the body (usually less than 5% blast cells on the bone marrow).
  
  CJ’s treatment plan will include intensive combined treatments of chemotherapy and steroids. He will receive some of these drugs through his port, some will be injected into a muscle (thigh) or tissue (under the skin) and others will be administered orally – by pill or liquid. Because this disease can invade the central nervous system, CJ will receive periodic doses of chemo directly into his spinal fluid. Each time the doctors draw spinal fluid for testing, the fluid will be replaced with a chemo treatment.
  
  The treatment of ALL usually has 3 phases:
• Induction therapy: This is the first phase of treatment. Its purpose is to kill the leukemia cells in the blood and bone marrow. This puts the leukemia into remission.
• Consolidation/intensification therapy: this is the second phase of therapy. It begins once the leukemia is in remission. The purpose of consolidation/intensification therapy is to kill any remaining leukemia cells that may not be active but could begin to re-grow and cause a relapse.
• Maintenance therapy: This is the third phase of treatment. Its purpose is to kill any remaining leukemia cells that may re-grow and cause a relapse. Often the cancer treatments are given in lower doses than those used for induction and consolidation/intensification therapy. The length of maintenance therapy is 3 years for boys, 2 years for girls.

Harrison County to 7 West

Well, here we are - 7 West - the oncology floor at Kosair Children's Hospital. The diagnosis is acute lymphoblastic leukemia, or for short - ALL. From what we have learned ALL is the most common form of childhood leukemia and the most treatable.

Our nightmare began 6 days ago on Thursday, 3/5/2009. A week or so before, CJ had been treated for strep throat. At first he seemed to be feeling better, then he began to weaken and started running a temp again. Sheree took him to the doctor and they ran some blood tests. Later that evening Sheree received a call from the doctor telling her they needed to get CJ to the emergency room for more blood tests. Greg and Sheree rushed him to Harrison County Hospital in Corydon where they re-tested his blood. At first, there was talk that it could be a virus, or possibly, a low-grade infection. His little mouth was covered with canker sores. He was just so miserable.

When the second set of blood tests returned the same results as the first, doctors at Harrison County had CJ rushed by ambulance to Kosair Children's Hospital in Louisville. His red cell, white cell and platelet counts were all dangerously low. They gave him transfusions of whole blood and platelets during the night and the following day. Once we arrived at Kosair they drew more blood, took xrays and ran more tests. After a couple of hours we were moved upstairs to the ICU. CJ dozed off and on, but never really slept. In the early morning, a doctor came in, pulled up a chair and told us it was time to talk. She was really very kind as she told us they were 95% sure that CJ had leukemia but they would have to do a bone marrow test to confirm the diagnosis.

Later that afternoon they did the bone marrow biopsy and moved CJ to 7 West. Within 2 hours the first results were back and the diagnosis was confirmed. More samples of his bone marrow have been sent to the lab to determine if the cancer has affected other organs like the liver or spleen. The next step was to have a port surgically implanted in CJ's little chest. This is a catheter that runs directly into a major vein. Once it was inserted, they were able to remove the IV's that had been placed in his arms. During CJ's treatment he will receive some of his chemo drugs, blood transfusions and other medications through this port. He will have his blood drawn and tested 3 times a day. They can draw blood from his port so he doesn't have to be stuck every time.

While he was under anesthesia having the port placed, they also did a spinal tap. They needed to test his spinal fluid to determine if any cancer cells appeared there. As a standard part of the treatment protocol, they inserted a chemo drug directly into his spine to replace the spinal fluid they drew. He will receive periodic spinal taps and bone marrow biopsies throughout his treatment program. I will have to follow-up with Sheree to see if they have received the lab results of this test yet.

Because CJ was admitted over the weekend, we didn't really get a full sense of what life is like on 7 West. It is a busy place. We spent the day Monday watching a steady stream of people come through CJ's room. I don't mean visitors, but hospital staff, doctors, volunteers, administrators - you name it - they stopped by. They have music therapists, art therapists, massage therapists and the most wonderful professional staff! CJ's room quickly began to fill with deliveries...balloons, baskets of snacks, toys, cards and love - lots and lots of love.

All of the activity was a good thing since that morning, CJ was placed in isolation. He was required to stay in his room...no visits around the corner to Evan's Playroom which he discovered on Sunday. The sores in his mouth were determined to be a form of herpes virus and they couldn't risk exposing the other kids on the floor to it. He will be required to stay in isolation until it's better. Visitors must wash their hands as they enter and leave his room and we must wear gowns while visiting.

The plan for Monday was to begin the chemo drugs, but they couldn't give him the first dose until he pooped. Don't anyone question CJ's stamina and will power. He refused to go and nobody was going to convince him otherwise. No begging, pleading, prodding, or bribing was going to work - not even multiple doses of over-the-counter and prescription laxatives was going to make things move. Finally, the laxatives took over and we had success, but not until 11:00 pm. The chemo was administered before midnight that night.

Welcome

Welcome to CJ's new blog. This blog will be a collaboration of Sheree (Mommy) and Kitty (Greg's Mom). Sheree and Greg are at Kosairs with CJ starting the first phase of Chemotherapy. Sheree will send updates for Kitty to post here as often as possible. Check back soon for more info.

Also, a PayPal account is being set up to accept donations to assist Sheree and Greg with the expenses of CJ's treatment. Please look to the right for info on how to donate.