A good week

Jack is handling his chemotherapy very well. While it exhausts him, he still manages to keep a positive attitude. It really is amazing to see how strong he is.

Unfortunately, his play date options are really limited right now. The disease and its treatment make him vulnerable to the slightest thing. Since he can't really play with other children yet, you can see why everyone was thankful to have had such a beautiful (albeit windy) week in South Orange. Jack enjoyed many trips to the local playgrounds and parks, where he could enjoy watching his big sister romp with his playgroup friends, and also enjoy some QT on the swings.

Of course, there is still nothing better than cuddling with daddy and mommy!

Jack begins Week Three of chemotherapy tomorrow. Think of him often and say a little prayer, or two, or three.

All about remission

When my husband got home from work last night, our conversation went something like this:

Me: "Guess what? Jack's in remission!"

Him: "That's great!" Then there was a pause and his expression turned to bewilderment.

He continued: "Already? Wow." He paused again, and I could tell he was trying to process the news. He continued: "That just seems really fast, doesn't it? I mean, chemo just started, so what does remission mean?"

As I talked with him some more, it occurred to me that many of you might have had the same reaction: sheer happiness to have had such a positive result so quickly, and also many questions about what it all means. So here is a quick primer about remission.

Remember in the post a few days ago where we referenced Rapid Early Responders? Well, that's Jack. He bravely received very aggressive chemotherapy, and the doctors expected to quickly put his leukemia into remission. But there is still a long road ahead of Jack. His battle against cancer is a marathon, not a sprint. According to The Children's Oncology Group being in remission unfortunately does not mean that the Jack is cured, because without further treatment the disease will return.

So what is next? Once he completes Induction, there are three remaining phases of cancer treatment which can span 2-3 years: Consolidation, Delayed Intensification, and Maintenance.

Here is the summary Cure Search provides about those treatment phases:

• Consolidation: The second phase of treatment. This phase lasts from four to six weeks. Different drugs from those used during Induction are given by mouth and intravenously. This is to kill leukemia cells that may remain after the drugs used in induction. During this phase, another main focus is on treating and preventing the growth of leukemia cells within the central nervous system (CNS prophylaxis). To accomplish this, spinal taps with intrathecal chemotherapy (directly into the spinal fluid) are performed weekly. For certain types of leukemia, or if leukemia cells were present in the spinal fluid at the time of diagnosis, radiation therapy may be given to the brain and the spinal column during this phase.
• Delayed intensification: This is a phase that includes medicines similar to those given in Induction and Consolidation. This has been shown to be helpful in preventing leukemia from returning. The exact timing of the doses and the specific drugs used depend upon the individual characteristics of a particular child’s disease.
• Maintenance: The final phase of treatment. This phase of therapy lasts two or three years. Maintenance is much less intensive than the previous treatment and consists mostly of oral medications given at home. There are also intermittent intravenous and intrathecal medications given throughout this phase.

As you can see, while we can rejoice in the knowledge that Jack is winning his battle against cancer right now, we need to remember that he is still at war with leukemia. Continue to keep the Bailey family in your thoughts and prayers.

How do you spell relief?

R-E-M-I-S-S-I-O-N!

There were no cancer cells found in Jack's bone marrow! While he still needs to complete the Induction phase with the remaining scheduled intensive chemo treatments, the doctors are very pleased with how the drugs have worked thus far. Once Induction is complete, Consolidation Therapy will begin. Please sign his guestbook and celebrate the good news!

Round Two

"The future doesn't belong to the faint-hearted; it belongs to the brave."
--Ronald Reagan

Jack returned to the hospital this morning to undergo his second round of intensive chemotherapy. While he receives some chemotherapy drugs orally every day, today was a partial repeat of Round One. It involved receiving Vincristine through his portacath and Methotrexate using a needle inserted into the fluid surrounding the spinal cord. In addition, the doctors performed a bone marrow aspiration to see if the leukemia is responding to treatment. Jack handled everything in his trademark positive, brave manner. The Baileys are eager to receive the results of the bone marrow procedure tomorrow. Please keep them in your thoughts and prayers.

All about ALL

Since Jack's diagnosis, friends and family have wanted to know more about the type of leukemia Jack has and what his medical treatment involves. Below is a summary taken from documentation Anneli and Damond received from the hospital.

Jack has acute lymphoblastic leukemia (ALL). ALL is a cancer of the blood cells. It develops in the bone marrow, which is the soft tissue in the center of bones where blood cells are made. ALL is a cancer in which young, abnormal, infection-fighting white blood cells, called 'blasts', crowd out normal bone marrow cells and spread into the blood stream. Blasts can also spread to the brain, spinal cord, testicles, and other organs.

Jack has leukemia that is classified as Standard Risk (SR) because his white blood cell count is less than 50,000/microliters and he is at least one year old and less than ten. Based on his diagnosis of Standard Risk B-precursor ALL, the Bailey's were invited to enroll Jack in a clinical trial research study organized by Children's Oncology Group (COG). COG is an international research group that conducts clinical trials for children with cancer. The overall goal of the study is to see if the doctors can get rid of the cancer for as long as possible with acceptable side effects of therapy.

The family consented to participate in the clinical trial. The first stage of treatment is called Induction. The leukemia treatment in this stage is the same for patients who choose to be in the clinical study and those who do not. During Induction, the doctors try to remove all visible signs of leukemia and allow normal blood cells to be restored (this is called remission). Five chemotherapy drugs are used during this stage of treatment.

The five chemotherapy drugs are:
1. Cytarabine, which is a drug used to treat the brain and spinal cord and is given using a needle inserted into the fluid surrounding the spinal cord.
2. Vincristine, which is a drug given intravenously.
3. PEG Asparaginase, which is a drug given using a needle injected into the muscle.
4. Dexamethasone, which is a liquid steroid drug given orally twice daily.
5. Methotrexate, which is another drug used to treat the brain and spinal cord and is given using a needle inserted into the fluid surrounding the spinal cord.

Common side effects of the cancer treatment include nausea, vomiting hair loss, and fatigue. The most common serious side effect is lowering of the number of blood cells resulting in anemia, increased chance of infection, and bleeding tendency. In addition, risks associated with the drugs used include increased toxicities that can cause infections or make it harder to fight off infections, loss of healthy blood cells, and damage to bones or joints.

Induction lasts 5-7 weeks, and by the end of Induction, Jack's doctor will know the subtype of the ALL. During Induction, tests will be done on Jack's bone marrow samples to find out how well the treatment is working. These measurements will assess Jack's response to treatment and determine if stronger therapy is needed to reach and maintain a remission. (Patients are either classified as rapid early responders (RER) or slow early responders (SER). RER patients respond to treatment more quickly and go into remission faster, resulting in fewer courses of chemotherapy. SER patients respond to treatment more slowly and take longer to go into remission, resulting in more courses of chemotherapy.) Jack's bone marrow will also be tested at the end of Induction. Hopefully, there will be no more leukemia cells in the bone marrow, and the disease will be in remission.

Based on the study, the doctors should know how strong the rest of Jack's treatment needs to be to keep the leukemia in remission. Once the study doctors know the ALL subtype and how much leukemia is left in Jack's bone marrow, he may continue in Part II of the clinical trial for the next phase of therapy, called Consolidation. We'll summarize that phase when we get to it.

For even more information, you can download the COG Family Handbook for Children with Cancer by clicking here. You can also visit the National Cancer Institute website by clicking here.

60 Hours of Freedom!

Good news! The doctors agreed to discharge Jack last night so that he could spend the weekend at home with his family before returning to the hospital on Monday to begin round two of chemotherapy. Emma was ecstatic to see Jack "unplugged" from his IV. "No more medicine for now," she told me.

Anneli reported that Jack slept well in his crib for most of the night, joining Emma in her bed for their last few hours on Sleepybye Lane. A (fingers-crossed) quiet weekend is before them, hopefully fever-free with lots of cuddle time. Keep sending positive thoughts and prayers their way as they return to the hospital Monday morning.

Yesterday's visit.

I had such a great visit with Anneli and Jack yesterday. For having just had a leg muscle injection a few hours earlier, he seemed to be in pretty decent spirits. He honored me by allowing me to feed him his mac and cheese (he ate a lot!) and we all shared a few fries. We even played a little peek-a-boo and had a blinking contest. He won, of course. After some music time on the floor with Mom I had to go, but it was really comforting for me to see lots of wonderful signs of Jack just being Jack. He is a true fighter. I'm also amazed and humbled by what an incredibly strong and brave woman you are, Anneli. I'm proud to call the Bailey family our friends. I hope the remainder of Jack's hospital stay is brief and thank you for letting me share some time with you. See you soon.

xoxo,

Nicole

Do you want fries with that?

Jack's appetite is back! Yesterday he ate some macaroni and cheese, and this morning he feasted on a waffle. Anneli said he even enjoyed McDonald's twice in the last week, which means he had more McCalories in seven days than he did in the last seven months. But honestly, who will hold that against him?!

Jack received a blood transfusion this morning because of his low hemoglobin level (normal is 11-12, and his was 7), so we hope that provides a good boost to his system. He remains tired from the chemotherapy and is sleeping a lot. When he is awake, he wants to play, and he has a very positive disposition. His energy burst will last ten to fifteen minutes, and then it is time to rest and drift off to dreamland.

Unfortunately, he is among the 20% of leukemia patients who experience severe leg pain. So although he wants to walk, it hurts to take more than a couple of steps. That leaves him spending much of the day snug in daddy or mommy's arms, the perfect spot to catch some zzzzz's.

The doctors are optimistic that Jack might be discharged soon. Please keep the Bailey family in your thoughts and prayers as they prepare to begin the next chapter in Jack's Journey. Be sure to sign his guestbook to let him know you are thinking of him!

Chemo update and family pictures

Anneli provided the following update this evening and passed along some pictures. You can't help but return Jack Jack's smile, can you?

Jack is doing well after his chemo injection this morning. No rash, no respiratory issues and no high blood pressure so we are pleased. We just have to pray that his blood count goes up or he might have to have another blood transfusion tomorrow.

Grandma!

Jack has had his injections this morning, it went well and he powered through them.

Last night Grandma came to visit and cheered everyone up. Playing dress up in Grandma's hat was especially fun!

A note from Anneli

Good morning-

I hope you had a good night's sleep. Jack slept like a baby:-)

I did not get that much sleep sharing the crib with him but just seeing him sleep and not having any pain is so wonderful...

We will soon get more pictures from the hospital where you can see how well he is responding to the chemotherapy.

He is an amazing fighter that wants to play. Yesterday he had music therapy and then we had the Bailey Family Band at the hospital where Emma, Jack, Damond and I were playing instruments and singing.

He does get really tired after about 15 minutes of playful activity which is normal. He is always excited to see Emma and she always helps us with suggestions on how to get him to eat or make him smile.

Yesterday, she suggested that Daddy should try the food when Jack clearly did not want to eat, and then we got him to eat three spoons of food. She also gave him a chocolate covered cracker and told him how much she loves him and that he is going to get better.

All three of us (Damond, Emma and myself) got to see the Valerie Center where Jack will be coming as an out patient for the next three years - You can check it out by clicking here. They have a wonderful staff and wonderful environment for both Jack and Emma (they encourage siblings to come along).

This morning Jack is going to get his chemo drug injected into a muscle using a needle, which we hope won't hurt him too much as the magic cream has been applied on his legs already. This is in addition to the chemo drug he takes orally twice a day. Think of him and send him good energy...

Love, Anneli

Did you know...

There is another blog, Friends of the Bailey Family (see tab to the left under "My Blog List"). That is where everyone supporting Jack's Journey can go and find ways to help. Because we would like to keep JJ as more of a journal where friends and family can go to for updates about Jack, we've created the "Friends" blog to enable friends of the Bailey family to best organize and support them.

On the "Friends" blog, you can see the entire calendar to find who is providing meals and see other upcoming events (like the community blood drive at Congregation Beth El on Irvington Avenue in South Orange this Sunday from 9:00 am - 1:30 pm). If you would like to input events on the calendar or post on the "Friends" blog, please contact me at careymerrill@yahoo.com and I will add you as an author. Thank you for your support!

A very quick post to say...

Hip Hip Hooray! Jack was fever-free today!!!

Superbowl!

Yay, some Dude Time on Sunday with Daddy! Jack enjoyed spending Sunday night watching the Superbowl and.. Shhhh... trying some McDonalds.

Good Morning

Jack is doing well this morning after a good night's sleep. He is being very strong and is in good spirits, flirting with the nurses, waving and giving High Fives! Please see also the Friend blog for Silvia's update from her visit last night. Speaking of the Friend's blog I just want to point out that it and the calender are great tools if you are wondering what you can do to help.

Taking the fight to the enemy

Today, with his mommy and daddy by his side, Jack fought back. He received his first round of chemotherapy drugs orally, injected into his portacath, and injected into his cerebrospinal fluid through a spinal tap. When I spoke with Anneli this afternoon, Jack was resting in Damond's arms. He had eaten, which was a good sign, and although he was a little fussy, we agreed that he had good reason to be!

Eleanor Roosevelt said that "you gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." Today the Bailey family did just that.

Round One

Jack is scheduled to begin his first round of chemotherapy Monday morning. He still has a slight fever tonight, and is receiving another blood transfusion to give his immune system a boost before receiving the first chemotherapy cycle. Please keep him and his family in your thoughts and prayers.

You can access additional information about chemotherapy here and here (scroll down the page on the second link to get general information about chemotherapy for treatment of ALL).

Sign Jack's Guestbook!

And so we begin...

Jack's journey began on Wednesday, January 28, 2009, when he was admitted to the hospital with a high fever. On Thursday, his parents learned that their beloved 18-month-old son had acute lymphoblastic leukemia. On Friday, Jack received a blood transfusion to boost his immune system, and today he underwent surgery for the placement of a portacath in his chest, through which he will receive chemotherapy. Our thoughts and prayers are with him and his family.

This blog is an attempt to centralize information for friends and family, as it can become very exhausting for Anneli and Damond to relay to all of us what is happening with Jack. Hopefully putting information here will ease that burden a little. In addition, we will chronicle Jack's Journey so that someday he, too, can read about how brave he, Emma, and his parents were during this challenging time.

I also know there are many friends who want to help the Bailey family, and I hope this blog can help organize us. Using the calendar link on the left, we can plan and provide meals and other support over the coming months. Also, please share links to other websites or blogs you find helpful, and I'll add them to the "blog roll" on the left. Finally, if you are reading this blog, you are part of Jack's Journey. While we are all certainly on a path we never anticipated, at least we are on it together.