Want to "OFFICIALLY" be part of team Jack-Jack?!

Anneli has registered team "Jack-Jack" for the “The Valerie Fund” Walkathon, which will be held in Verona Park, New Jersey, on Saturday June 13th. The Valerie Center at Saint Barnabas is where Jack will receive his chemotherapy treatments for the next three years, and the Bailey Bunch is excited to show their support for the facility and staff that have made this difficult journey easier for them. For more information about The Valerie Fund, click here.

To participate in the walkathon, you can register to walk or run. Make sure you select "Join an existing team," and then scroll down and select "Jack-Jack." Click HERE to register! After you press the Register button below, you will be asked for a $10 for walking/$25 for running minimum donation to your team. The suggested donation for walking is $30.

To donate to Team Jack-Jack's efforts to raise money for The Valerie Fund, click HERE and find "Jack-Jack" in the drop-down list by "Pick a team." Your support is very much appreciated!

The Bailey's hope you can join them on June 13th!

Making progress

Jack's ANC has climbed to 370...nearly half what he needs to resume chemotherapy treatment. He looks great and is SOOOOO happy to be home.

The current plan is to return to the Valerie Center on Monday for another ANC test, and, if his white blood cell count is where it needs to be (at least 750), he can receive his next round of chemo (which, ironically, will cause his ANC level to drop again). Keep sending prayers and positive thoughts his way!

Home again!

Jack is back home, although his counts are not up yet. The doctors agreed to discharge him despite his still-low ANC level (it was at 169) since he had received a complete week of IV antibiotics. He needs to return to the hospital tomorrow (Wednesday) for another blood test, which hopefully will show a higher white blood cell count.

In the meantime, Jack is happy to be back in South Orange. He can't really have visitors because his immune system is so fragile right now, but at least he is with his family. Should you make arrangements with Anneli and Damond to visit, please remember how important it is to wash your hands! It is easy to forget at times that Jack Jack is so vulnerable, when you see him smiling, laughing, and playing. But we all must be vigilant in not exposing him to germs that can make him sick. Here is a link to a NY Times article that explains the absolute neutrophil count and, again, how important hand washing is.

Thank you for your continued prayers and support. We will be sure to post about Jack's trip back to the hospital tomorrow.

Sunday's Medical Update from Anneli

(A Picture of Jack Jack taken today with Anneli's Phone)

It is Sunday and we are still at the hospital. The good news is that Jack's counts are up to 220 - Yea!

We are certain that it is because of all the good energy and prayers that you all continue to have for him.

Jack's doctor mentioned on Thursday that he will have to stay here for a "few days" until his counts reach 500. The first few days felt nothing like the last few, with Jack dancing with the IV pole and discovering every thing in his room including the electrical outlets and the call button for the nurses!

Both Damond and I try to stay positive for Emma and Jack. This hospital stay has been hard on Emma especially, as she is used to us being together as a family in the evenings and on the weekends. She has not been sleeping as well as she normally does, and Emma said to me last week: "Jack does not need to be sick anymore and I don't think he needs any more needles or chemo." She even told the nurses this at the hospital. Big sister Emma is looking out for her little brother.

The reality is that we don't want Jack to be sick either. But at least he is in really good hands. And with the wonderful support that we have from family and friends (you all know who you are) we will be able to fight this and be there for Jack.

This weekend has been extra special with my high school friend Ulrika and her fiancé Magnus visiting from Sweden - Emma has been getting a lot of their undivided attention and been made to feel extra special - Just what Emma needs at this time. I, in turn, have had a chance to spend time with a very special friend and I am happy that Ulrika has gotten to know Damond and I have gotten to know Magnus.

Another South Orange friend, Kristen, who is a photographer, visited us on Thursday last week and took these amazing pictures:


Have a great week and cross your fingers that Jack will be going home on Monday or Tuesday.

Love,
Anneli

Have you prayed for Jack Jack today?

First, the bad news: yesterday Jack's ANC count dropped to zero.

But then Damond amazed me when he told me the "good news." Since the count was at zero, the only place it can possibly go is up! His outlook inspired me and made me smile. What an amazing attitude to have. Jack is truly fortunate to have parents who can stay so positive in the face of such circumstances.

Jack's ANC had climbed back to the mid-40s today. He still has a long way to go before he reaches 500, but at least he is on his way. Please continue to keep him and his family in your prayers. It has been a very long week at the hospital and your thoughts, well-wishes, encouragement, and prayers are so very much appreciated.

Bringing the outside in

Yesterday Anneli mentioned how much Jack Jack missed going outside. Spending 24 hours a day in a tiny hospital room is a real drag for a little guy who is used to fresh air every day. So today Elin and I packed a picnic lunch for them to enjoy, complete with a blue gingham blanket and wicker basket. Lots of visitors dropped in during their time on the floor, including the outstanding CCLS professionals who always bring a smile to Jack's face, and a funny clown who awed Emma and Jack with her plate-spinning abilities. The fun lunch was a hit...now we just need to figure out how to bring in the grass, fresh air, and sights of spring to make Jack miss the outside a little bit less.

Happy Jack

Emma enjoyed a visit with Jack at the hospital today. He beamed when she walked into his room and did the cutest little happy dance. They enjoyed sharing time with Mommy and cuddling together. It was so nice to see him smiling, giggling, and cozy. Emma can't wait until Jack Jack comes home!

Medical Update From Anneli

So we saw Dr. Rifkin (Jack's doctor) this afternoon and this is the update:

Jack's blood tests came back negative which means he does not have a bacterial infection but he more than likely has viral infection.

His ANC (White blood cells) counts are very, very low. They went from 209 on Monday, to 112 yesterday to 40 today.

The good news is that he has been fever-free since last night and his counts are slowly starting to rise. But until they are over 500 he will not be able to leave the hospital... and until his counts are above 750 he will not be able to start his next treatment phase.

To be on the safe side, Jack is still getting antibiotics every 12 hours and the music therapy he had this morning also helps him keep up the fighting spirit.

Jack's doctor thinks there might be chance he will be sent home tomorrow or on Friday. Please keep your fingers crossed that his counts will go up fast as Jack is definitely ready to leave the hospital and we are all ready for him to come home:-)

XOXO,
Anneli

Easter Update - A Note From Anneli

(Click on pictures to enlarge)We had a lovely Easter weekend. We first got to enjoy Easter brunch with Elin's family visiting from Sweden and then Emma and Jack hunted for Easter eggs in our back yard. This was later followed with a delicious Easter dinner at a dear family friend's house.

Emma and Jack wore really nice outfits thanks to grandma.
Yesterday morning (Monday), Jack was at the Valerie Center to start his next treatment phase (Interim Maintenance) when they discovered that his ANC was low – only 209 which is real concern as this means he is really prone for infections.

In practical clinical terms, a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that the patient's activities do not need to be restricted (on the basis of the ANC).

ANC stands for the absolute neutrophil count, the number of white blood cells (WBCs) that are neutrophils.

Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.

As Jack's ANC did not really rise from last week, his doctor scheduled a blood transfusion so that Jack would feel better and we were told that he would go home later Monday afternoon and that he would be “ready to rumble”.

Unfortunately, Jack started running a fever (100.9 F) around lunchtime, which meant that he has to be hospitalized for 48 hours with antibiotics in addition to the blood transfusion.

This also means that Jack was not able to start the next treatment phase.

Cancer is not fun at all and we are slowly learning to adapt to the uncertainty of never knowing what each day is going to bring. The good news is that Jack is in good hands and as you can see in the pictures he had fun celebrating Easter and he is having an equally good time together with daddy at the hospital.

Jack's New Job

On Monday, Jack received his third round of Consolidation-phase chemotherapy, and continued to impress everyone with his resilience and positive attitude. Despite receiving two peg shots (one in each leg), he dashed right out to the reception area. You see, Jack has taken on a new role at the Valerie Center: official greeter! He warmly welcomes everyone, young and old, doctors, patients, parents, and siblings, with a big smile, friendly wave, and clear "hello!" His amazing demeanor brightens even the sad, scared, and tired faces...who can resist his charms?! There is no doubt that his enthusiasm is contagious or that he truly brightens up the room. But we all knew that already, didn't we? Jack Jack is truly a remarkable little boy.
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In other news: I'm not sure how it happened, but Jack's Journey appears to have been the victim of "comment spam" from someone whose profile simply identified him/her as "will." This blog, while public, is set up to NOT be located through search engines...in other words, you don't need a password to access the blog, but if you don't have the address, you aren't going to find it online with a Google or Yahoo search. Anyway, I have no idea what the text said, except for a few choice words, as it appeared to be symbols of some kind. I deleted all of the entries and have now instituted "comment moderation" on the blog to prevent such an intrusion from happening again. All that means is, if you should choose to comment on a post, your text won't appear immediately (it gets e-mailed to me first). I apologize in advance for the delay, but it appears necessary to protect the integrity of Jack's Journey.
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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!