Jack is home!

The good thoughts worked. Jack is home and playing soccer in the backyard. The Valerie Center nurse fixed the port when she came in this morning. It was also decided that he did not need the last round of antibiotics at this time. He had already received some before last night.

Speaking of the Valerie Center. Please save the date of June 13 when there will be a 5K run/walk benefiting the Valerie Fund!

A Hard night

I spoke briefly with Anneli this morning. They have been having a hard night as there are some problems with the port-a-cath and getting an IV going, which is important to be able to administer the antibiotics if I understand it correctly. Please send good thoughts little Jack's way for a better day today!

Back to Saint Barnabas

This morning, Jack was re-admitted to the hospital when his pre-chemo treatment blood tests showed low blood sugar levels and another infection brewing. It was a shock to Damond and Anneli, as Jack appeared to be in good health; he had a fantastic weekend and did not display any signs of illness.

That's the amazing thing about medicine: the tests the doctors run let them detect an illness even before Jack's body has manifested any outward symptoms. So as difficult it is to have him re-admitted, we know it is a necessary precaution to protect Jack's fragile immune system.

Once he was admitted and his blood sugar levels went up, Jack received his chemotherapy treatment through a spinal tap so that he remains on track for his Consolidation treatment. His doctor anticipates discharging Jack after he receives enough antibiotics to conquer the infection. I'll be sure to post if there is any change to that plan. In the meantime, keep the Baileys close in your thoughts and in your prayers.

Consolidation

Last week, Jack was selected to participate in the clinical trial for the next cancer treatment phase in his battle against leukemia, Consolidation. Unfortunately, although he was fever-free, his pretreatment labs showed a slightly elevated white blood cell count, which meant a brewing infection. So the doctors directed that instead of beginning his first round of Consolidation chemotherapy (which is a real doozy), they decided to wait a week and have Jack continue with his antibiotics that he takes Friday, Saturday and Sunday on a regular basis because the doctors want him to be as "healthy" as possible for Round One of this new phase.

Damond returned with Jack to the hospital on Monday, the 16th, for the "first-is-worst" round of chemotherapy. Jack received the cancer-killing drug through his portacath, through an injection into his leg muscle, and through a spinal tap in his back. The clinical study Jack is part of includes four injections into the leg muscle, which we hope Jack will not have any allergic reaction to (if there is a reaction, each injection is replaced with four injections which means that there can be as many as eighteen injections over the course of the Consolidation period). As always, Jack handled the treatment in his now-world-famous (thanks to you, dear readers!) brave, positive manner.

Jack had a return trip to the hospital yesterday morning to rule out another infection. The initial lab work indicates that he is thankfully in the clear right now. It really is scary to think how vulnerable his immune system is right now. When I saw him running around the library Tuesday morning after his second hospital visit in as many days, I could not believe what he had been through a mere 24 hours before. He was smiling and laughing and playing so sweetly. Apparently the "post-chemo-honeymoon" lasts about 48 hours (right now) before the negative side affects kick in--nausea, vomiting, fatigue. So please continue keep the entire Bailey family in your thoughts and prayers, especially these next few days.

Five Weeks (a letter from Anneli)

Dear Family and Friends,

So, it has been a little more than five weeks since Jack was diagnosed with leukemia - weeks that feel like a year. Having a child being diagnosed with cancer is so very hard and we have a long journey ahead of us.

We have had to learn so much this past month about an illness we knew almost nothing about, and it is not until now that we have finally realized that Jack has cancer.

We have also had to deal with a lot of emotional and informational stress. Some days we feel stronger than others and some days we just feel like we are not sure we can do this...but then we stop and think again and we know we can, and have to, because we have to think of Jack and Emma.

We feel that Jack is in very good hands at the Valerie Center and we are very pleased with his doctor (Dr. Rifkin) and the nurses. Jack has also discovered the ability to charm them. :-)

We are happy that Jack is responding well to his treatments, but as his mother, I am having a very hard time with the side effects of his medications and the chemotherapy, and that he is not able to always communicate what he feels. We are able to understand him, for the most part, and Emma is good at figuring out what he wants or needs.

We are fortunate to be a strong and warm family, and Damond and I know that we are the foundation for our children. We try to find positive things for Jack and Emma every day and we laugh a lot; from time to time, we even cry.

I remember when I told Emma that Jack was sick and that we were sad. Her response was, "I know Mamma, and I know that it is not a cold, but don't worry he will be ok."

We have also talked to Emma about the fact that Jack will at some point lose his hair and Emma's response this time was, "That's ok - he will just look like a sweet baby boy again."

Emma is so positive in this journey and is also Jack's best advocate - she makes sure that everyone washes their hands when they come to our house and before touching Jack.

We have also had to deal with tough questions from Emma: “Can I also get cancer?” “Will Jack die . . ."
Damond and I talk a lot and find so much strength in each other, and our children. (Please see some photos from last week) Also having the love and support from friends and family nearby and all over the world helps us all a lot.

We feel so fortunate to be part of the Maplewood-South Orange and Beth El community; the community has helped us, in many different ways, and it is wonderful to have the support from so many people during this challenging time. We would like to thank everyone far and near for everything you have done for us and continue to do - It means more than you will ever know.
Please continue to keep us all in your prayers as we enter the next treatment phase for Jack – Consolidation.

Love,
Anneli

Reason to smile

The Bailey Bunch got good news from the doctors today: Jack's cancer remains in remission. The chemotherapy period referred to as Induction is complete, and now Jack begins the second phase of chemo, called Consolidation treatment. During this period, which can last between 4-6 weeks, he will receive different drugs to fight the leukemia cells, again both orally and through his portacath.

The Bailey's will find out soon if the hospital computer selects Jack to continue as part of the Children Oncology Group's clinical trial or if he will receive standard treatment for Consolidation. In addition, the doctors advised that ideally three years from today will mark the end of Jack's chemotherapy treatment. While it is comforting to know that there is an end in sight, it is also hard to fathom 1,095 more days of cancer treatment. Perhaps it is best to not look that far ahead and instead just live in each moment, taking it one day at a time. As Maria Edgeworth said, "If we take care of the moments, the years will take care of themselves." So enjoy the moment below, which I did yesterday. I promise to post a picture of Jack in three years sticking out his tongue as a precocious four-year-old!

Tomorrow

Jack heads to the hospital tomorrow for another heavy-duty round of chemotherapy, as it includes a spinal tap and bone marrow aspirate to ensure the absence of cancer cells. If all goes well, Jack will be ending the Induction phase his treatment, and he will be cleared to begin the next phase of chemotherapy, called Consolidation. Keep the Bailey Bunch in your thoughts and prayers.

Medical update

Jack continues to respond well to his chemotherapy regimen. The medical staff closely monitors his hemoglobin levels to gauge whether a transfusion might become necessary, as the powerful drugs that kill cancer cells destroy healthy blood cells as well. Early last week, Jack's hemoglobin level was only 198. It jumped to 400 last Thursday and at the beginning of his fourth week of chemo on Monday, it neared 900. Hooray! So far, another blood transfusion has not been necessary.

In other news, Jack appears to be warming up to his weekly appointments at The Valerie Fund Children's Center. Last week he happily accepted the bagel his doctor offered to him (no surprise there, right?!), and the other day, when the Child Life Specialist invited Jack to play, he took her hand, turned, and waved goodbye to Damond without hesitation. That simple event was a major milestone in Jack's treatment, and demonstrates his positive adjustment to the new reality he has found himself in. To know he can enjoy a "play date" at the hospital makes the weekly trips easier for him, and his family, to handle.

Hungry Jack

I spent my first solid chunk of time with Jack today since the diagnosis. (I'm Carey's husband, Rob, by the way.) Earned a day off work and spent it with my daughter, Greta, and Emma. We enjoyed story hour at the South Orange Public Library, had lunch at Eden Gourmet and frolicked on a local playground. Jack joined us for lunch and a little post-playground play at the Baileys.

Carey told me that his appetite had grown since starting on steroids, but I had no idea! As soon as Elin strolled into the cafe with Jack and he saw the slice of pizza on my plate and the penne with meatballs shared by Greta and Emma, he started making mewling sounds that crescendoed to growling. Elin couldn't get an extra plate and fork fast enough! He had at least 5 meatballs and most of a cheese slice.

Two hours later, I saw him in his natural habitat, where the Baileys have hooked him up with a dining nook below one of the kitchen counters. He has a bottle of juice and a bowl filled with what I thought looked like Teddy Grahams. He spent about 75% of his time happily noshing, watching Emma and Greta run around. I'm sure there will come a time during his treatment when Jack's appetite wanes significantly, but for now it was great seeing him doing something as natural as eating -- something the healthy among us often take for granted.

Getting the point

Jack starts each morning with a determined extension of his arm, his three fingers curled down, his thumb bent over, and his pointer finger fixed toward the door. Scooped up in Anneli, Damond, or Elin's arms, Jack's guiding hand leads them out the door, down the stairs, and into the kitchen. He points to the refrigerator, and when it is opened, he points to what he wants to eat. And he points and points and points. And then he eats and eats and eats!

Part of his chemotherapy regimen includes daily steroids, which has turned him into quite the hungry man. I watched in amazement as he devoured a huge slice of pizza and then started sneaking pieces of Elin's salad, bread, and chicken! But he is also selective in what he craves. Last weekend he rejected a yummy valentine's day cupcake and insisted on a third bowl of pasta. Oh, and he feasted on ELEVEN (!) meatballs the other day. Keeping up with his appetite is quite a challenge, and his doctors warned that later in the chemo treatment cycle Anneli and Damond might need to have midnight meals ready. Needless to say, their pantry and fridge are definitely getting a workout, as is Jack's finger!

The Big Sis

Earlier this week, the Bailey's good friend, Silvia, put the following entry up on the Friends of the Bailey Family blog. Instead of simply linking to it, I've copied it here, since, as Silvia points out, "Emma is a main traveler on this journey." Enjoy this glimpse into how this brave big sister is doing.

Monday, February 16, 2009

The Big Sis

John and I visited the Bailey Bunch last Friday. Tata Ginny was already there, sitting with Emma in her cardboard spaceship on the kitchen floor, reading a book. It was Friday: Pizza and Wine/Beer time with the Baileys. Emma grabbed me so we can have a "ghost party" in the living room. This party entailed sitting under a white blanket, chatting about her favorite things and sharing a bag of baby carrots. She gave me all the big ones and saved the little ones for herself - obviously since she cannot bite the larger ones, as she informed me. During these hard times, sometimes we need reminding that although Jack Jack is in the center of what is happening, Emma is also a main traveler on this journey and will have to overcome obstacles of her own. The best way we can help her on that journey is with the time we spend with her.

John and I waited until Damond came home to have some of the pizza, which we all have to agree, hot or cold, is pretty much the "candy of food," as Damond later very accurately described. While we were waiting, Ginny and I went up to put Emma to bed. She was such an energetic little one - unabashedly declaring that she was in no way ready to go to bed. She did, however, agree to reading one book, a bedtime song and kisses good night. We selected "I Want to be a Doctor," a Sesame Street book written by Liza Alexander and illustrated by Lauren Attinello. As we navigated through the story, Emma amazed me with her understanding of doctors, how they help people like Jack Jack and her interjections of what her "Little Bro" was going to go through in the next couple of years (losing his hair, etc.). She even pronounced "stethoscope" better than I did! This visit was yet another portrayal of the awe inducing nature of resilience in children. Although we are all born with an innate capacity for resilience, by which we are able to develop a sense of purpose despite adversity, Emma's way of dealing with Jack Jack's leukemia can teach us all something. Look at you, Emma, you're all grown up!

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.