Fever-free but not "free" yet

Jack's about to get tucked in for the night at Saint Barnabas. He had a "busy-doing-nothing" day at the hospital. Lots of cuddle time with Anneli while he continued to receive IV antibiotics and nebulizer treatments. The Bailey's are keeping their fingers crossed that the doctors remain pleased with his recovery and discharge him soon. Cross your fingers, too.

Out of the mouths of babes

Greta and Emma were playing with Playdoh this evening and I overheard the following exchange:

Greta: "Poor Jack-Jack. I wish he could be here to play with Lincoln."

Emma: "I know. I know. You have to be patient with someone who has cancer."

***********************
Jack is now receiving an IV antibiotic every eight hours as a patient at Saint Barnabas and also receiving oral antibiotics once a day for the next five days. In addition, he had a nebulizer treatment this evening to help his respiratory issues. His fever is finally gone, but so is his appetite. He is such a sick little boy. We hope his health improves dramatically over the next 48 hours. And we also look forward to him playing Playdoh with Lincoln soon, too.

Never say you're lucky...

Because when you do, that's when your luck runs out.

Jack is headed back to Saint Barnabas this afternoon because his temperature is not dropping in spite of the IV antibiotics this morning. The doctors want to admit him and get whatever infection he is fighting under control so that his chemotherapy regimen can continue. Please say a little prayer that his hospital stay will be brief. As Anneli has said, "Cancer is no fun!" Neither is being away from home.

ER luck (again!)

The Bailey Bunch had to go to the ER in the wee hours of the morning today. Jack spiked a fever of 103 in the middle of the night and was nauseous and vomiting. You can imagine Anneli and Damond's level of concern.

Fortunately, the ER labs showed that his ANC had risen to over 2,000, and a chest x-ray (due to his labored breathing and cough) showed apparently clear lungs (there was a small shadow, but nothing of major concern). After a dose of IV antibiotics, the doctors agreed to discharge him with a prescription for ten days of antibiotics because of his "healthy" white blood cell count. "No hospital admission? We'll take that!" Anneli declared.

Jack-Jack is home now quietly recuperating. Please keep him and the rest of the Bailey Bunch in your thoughts and prayers.

Weekend Update and Interim Maintenance Day 36

The Bailey's had a rough weekend, with Jack spiking a fever on Friday evening. You might recall that when you have acute lymphoblastic leukemia, any temperature over 100.5 degrees normally translates to a trip to the ER. Fortunately, Anneli spoke with on-call doctor for the Valerie Center before rushing to the emergency room, since Jack had received a heavy dose of chemo 48-hours earlier. While concerned about the fever, the doctor agreed to allow home-monitoring for 24-hours since Jack had eaten a great dinner and was running around playing with his dad and sister. Taking Jack-Jack's temperature every hour made for a quiet weekend at home, but after 24 hours the fever abated. The adage, "treat the child, not the fever" worked! Hooray! The Bailey's were fortunately spared a trip to the ER (and the inevitable admission to the hospital that would have resulted per hospital protocol.)

So Damond and Jack returned to the Valerie Center today for the Interim Maintenance Day 36 PEG shots. His pre-chemo labs showed a low ANC of 378, but the doctors ok'd a shot in each leg! After the muscle injections, Jack enjoyed a nap with Damond while waiting the mandatory 2 hours post-PEG-shot (to ensure no allergic reaction). He then bravely endured a chest x-ray because the doctors were concerned about Jack's cough. Fortunately his lungs are clear and he appears to be battling a slight cold. Hopefully by his Day 41 treatment, he'll be feeling better. Keep him in your thoughts and prayers this week!

A Note from Anneli: Day 31 of Interim Maintenance

Day 31 of Interim Maintenance

Normally it is Damond who takes Jack to the Valerie Center for his Chemotherapy treatments but on Wednesday this week I got to take him. The biggest challenge in the morning was that Jack wanted to eat breakfast at home and once we got to the center he directed me to the kitchen area and pointed towards the food.

Jack was not able to eat as he was having a procedure done and was having general anesthesia.

He was really upset and it was hard for me to see him trying to communicate that he wanted to eat but how do you explain to a twenty two month old that you cannot eat anything because it is important to have an empty stomach when having general anesthesia...

The good news was that Stan, an older gentleman, who has been a volunteer together with his wife Jean at the Valerie Center for 10 years was there and Jack loves to play with him. Stan is a wonderful distraction and Jack forgot all about food as Stan started showing Jack the train tracks.

Once the port had been accessed and the blood work was drawn, and sent to the lab and the results were back indicating that Jack's counts were good the anesthesiologist together with Dr. Rifkin was able to perform a spinal tap. Jack also received Methotreaxate in his spinal fluid in addition to given a second dose of Methotrexate and Vincristine through his port.

He also received a Pentamadine (an antibiotic) instead of Bactrim. This is an alternative given once a month instead of having to take the Bactrim twice a day for three days every week.

All this while Jack was zzzzzzz. Looking at the pictures you can see Jack sleeping while Kristine (his oncology nurse) is watching over him.


You can also see how happy Jack is waking up and getting to enjoy both a bagel and a muffin.
I mentioned Jack's blood cell counts and here they are in BOLD with a brief explanation:

WBC (White blood cell) - 6.9
White blood cells help fight infections and aid in the immune process.
Normal counts 4.5 to 11 thousand white cells per microliter of blood

Platelets - 317
Platelets are tiny cells produced by the bone marrow to help your blood clot in response
to a cut or a wound. Normal counts 150 to 450 thousand platelets per microliter of blood

ANC - 2760
The immunesystem which we have mentioned in previous entries.

Wishing you all a wonderful weekend,
Anneli

A Note from Anneli: Memorial Day Weekend & Superdad's Birthday

We had a busy three-day weekend playing, gardening, attending Swedish school, and the Maplewood Duck race. But most important was celebrating Damond's or Superdad's (as Emma calls him) birthday.

On Sunday we woke him up singing Happy Birthday and surprising him with cupcakes and then we had a Birthday BBQ on Monday. Emma decided on the cake design.




Besides enjoying the company of family, good friends and food there was quite a bit of playtime involved as you can see. Perhaps we have a future Yankee player in the family :-)

Love,
Anneli

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.