THANK YOU!!!

Tonight Team Jack-Jack passed the $1,000.00 mark in its fund-raising effort to support The Valerie Center! What a fantastic accomplishment. The Bailey family would like to thank everyone for their generosity and they look forward to seeing you in Verona Park on June 13th!

If you've been meaning to join the Team, there is still time. Just click the link on the left and scroll down to Team Jack-Jack when you select "donate to a team" or "register to run or walk." Show your support for the Bailey family by supporting The Valerie Fund!

Chemotherapy Life - An Update from Anneli

We had a very nice weekend and Jack was happy doing normal things like playing on the swing set, throwing balls, gardening with Mamma and Daddy, taking Emma’s things and running…

Yesterday, Jack had a 9:00 AM appointment at the Valerie Center where Jack, in addition to getting Chemotherapy, also got to meet his little friend David. David has a different type of cancer – Wilms Tumor.

Two very cute little boys in New Jersey are fighting cancer. Cancer that we are curing by pumping these little children (12,500 children and adolescents on average are diagnosed with cancer each year in the United States) with lots of TOXIC CHEMICALS that we end up compromising their immune system in the process.

The good news is that after you kill their immune system it bounces back again.

Jack’s ANC counts were really good yesterday – 4104. Whereas David’s ANC counts were low so they could not really be near each other (but they still managed to have fun and rub each others heads) and Damond was able to take their picture together.

The hardest parts of chemotherapy are the side effects that Jack is experiencing: Loosing his hair more and more, in addition to some weight loss, nausea and vomiting, taste changes (not liking certain foods from one day to another), peripheral neuropathy - (numbness and tingling of the hands and feet), and sensory loss - numbness and tingling, and difficulty in walking which may last for at least as long as the chemotherapy is continued. He fell yesterday when pushing his doll stroller – Our poor little guy.

In spite of all this Jack still remains positive and cheerful but it is hard on Damond and me. When you are a parent you NEVER want your child to have to experience any unnecessary pains. But we have no choice in order to help Jack through his journey fighting cancer, and continue to love him more than ever.

--Anneli

An update from Anneli

Good Morning to all of you-

I think you all know that Jack received his PEG shots yesterday, which he handled VERY well. The magic EMLA cream (numbing agent) does wonders. Jack has also discovered that after any pain there is gain in the play room for quite some time. After the PEG shots the medical staff keeps him under observation for at least two hours should there be a reaction towards the chemo, so there was a lot of playtime.

When Jack visits the Valerie Fund, we always find out what his ANC is. His counts dropped from 4600 last Thursday to 1073, which is expected as the chemo kills both good and bad cells. However, since his count is hovering around 1,000 (and expected to drop from the PEG shots), his immune system is compromised. Since he is at risk of an infection (which would result in hospitalization), his group play options are limited. He can't "host" or attend a play date, but can meet up for picnics in the park. Thank goodness the forecast is for a beautiful, sunny week!

All the best,
Anneli

No one likes needles

You all know how much a flu shot hurts...magnify that ten times, and picture getting it twice. Ouch, right? Well, Jack is headed back to the Valerie Center this morning for his Day 15 of Interim Maintenance PEG shots. These are shots of Peg-L-Asparaginase directly into Jack's leg muscles. It is a heavy dose of chemo that starves cancer cells of the amino acid asparagine. Without asparagine, the cancer cells die. The benefit of the shots is pretty clear, but that doesn't make getting them any easier. So please keep Jack (and Damond!) in your thoughts today!

Some sunshine on a rainy day

Jack returned to the Valerie Center this morning to have another round of chemotherapy. As you now know, before he can receive any cancer-killing drugs, the medical team tests his blood to measure his absolute neutrophil count (ANC) (white blood cells). I am ecstatic to let you know that Jack's ANC was (a drum roll, please...)

4,670!!!

Talk about "healthy!" Jack appears to have weathered very well the one-two punch the Vincristine and Methotrexate delivered to the cancer cells last week. Not only was everyone relieved, but also a bit amazed to see how his numbers climbed in the last 11 days (his ANC before chemo last week was 912). The Baileys are bracing themselves though, for the next week as the immediate post-chemo honeymoon passes; Jack-Jack received a higher dose of Methotrexate this week, which increases the likelihood of side effects. Please keep those positive thoughts and prayers for the Bailey Bunch coming!

Fun with friends

My daughter, Greta, was delighted that Jack could enjoy her birthday party today.
It was so nice to see him run around, play ball, charm Greta's 88-year-old Great Grandma with his shoe-kicking antics, and blow kisses.

No one minded the extra hand-washing, wipes usage, or toy limitations we imposed as everyone tried hard to keep the germ exposure as limited as possible. With all attendees (touch wood!) in good health, we hope our efforts are rewarded when Jack-Jack has his counts checked on Thursday for his next round of chemo. A happy birthday, indeed!

Happy days are here again (REVISED ON TUESDAY)

(Revisions from original post are in bold below)

Jack's ANC was 912 Monday morning, which meant he could resume his chemotherapy treatment at The Valerie Center. Hooray! After the recent two-week hiatus, he has started his third phase of chemotherapy, Interim Maintenance. He will receive intensive chemo at the Center every 10 days (1, 11, 21, 31, 41). The two drugs that he receives are Vincristine and Methotrexate, both given via IV push through his port. He does NOT need to take any chemo drugs while at home during this phase of chemo--Yay!

As you can see from the pictures taken this afternoon, he looks fantastic and (apart from having leukemia!) is healthy--a real improvement from the last couple of weeks when his white blood cell count was nearly non-existent. Say a little prayer that the "expected" ANC dip that follows chemo will be brief for Jack-Jack so that he can keep enjoying sunny days like today!

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.