The heat of battle

Today was Jack's second day of four chemo treatments in a row, for the second week in a row. His little body is doing an amazing job at handling all the hard core medicines it is being bombarded with. "Take that, cancer! And that! And THAT! AND THAT!"

Yesterday, though, was particularly rough, as he was at the Valerie Center nearly all day for treatment. His ANC was below 750, so in addition to chemo treatment, he had to receive a blood transfusion to give his immune system a boost. Unlike the Interim Maintenance phase, where a low ANC resulted in a delay in chemotherapy, in Delayed Intensification, there are no breaks in treatment. The doctors explained it to Anneli in familiar military terms: "When you are in the heat of battle, you can't retreat and risk losing the war." As you can see, they don't pull punches when explaining things, either.

"A tired Jack waiting for his blood transfusion"

Today Jack returned to the Valerie Center for chemo through his port, again. In addition, Anneli and Damond give him chemo at home every night with a crushed tablet in water through a syringe. He handled the morning like the pro he has become these last six months and ten days, and mustered enough energy to enjoy a nearby playground this afternoon.

"He-ey! I see you!"

Watching him smile while he was swinging, I could hardly believe all he had endured in the last 36 hours, or the last 191 days.

And he still has 48 more hours to go before getting a well-deserved break in treatment. Yes, it is back to the Valerie Center in the morning.

I know that if you're reading this, I don't have to say it, but I will anyway: please continue to keep Jack-Jack and his family close in your thoughts and in your hearts. General William Tecumseh Sherman was right when he said that "war is hell." And Winston Churchill reminded us that "if you are going through hell, keep going." Jack keeps going, and so do Anneli, Damond, and Emma. They have no choice but to wage this war as hard as they can for as long as it takes to keep Jack cancer-free. It brings them such comfort to know they aren't in this war alone. Because you are not just part of Team Jack-Jack, you are part of Jack's Army, and positive energy, caring thoughts, uplifting prayers, a cup of coffee, a shoulder to lean on, a home-cooked meal, and such are how we support this little soldier and the Bailey Brigade in Jack-Jack's war with cancer.

Cancer, Chemo, and Cupcakes - An Update from Anneli

Our little boy has turned two!

We started the day by going to the Valerie Center where Jack was going in for his third consecutive day of chemo.
It was a special day and the Bailey Bunch and Anna were all greeted by the wonderful and amazing staff at the Valerie Center.

After Jack's vitals were checked and the chemo had been ordered, Jack's friend Jesus came with a big birthday gift. Jesus carried this big package and said "This is for you, Jack!"


Then Child Life specialists Bethany and Melissa made a special appearance from the floor upstairs. They had their guitar with them and started signing to Jack, who was not quite showing signs of enjoyment.
What changed Jack's demeanor was when he opened up two gifts that he got from the Valerie Center and he realized that one of them contained a drum. Jack hoped down from my lap and started to drum and drum with a big smile on his face.


The cupcakes were a hit as well and Emma also got a small gift for being a great big sister. Emma's highlight however was getting to help flush the port in Jack's chest. Jack's nurse Kristine asked Emma if she wanted to help her, and Emma was quick to say "yes".

So even if this was not quite how Damond and I would ever have envisioned Jack's second birthday, I must admit that seeing him play the drum and enjoying his cupcake - I honestly don't think he would have wanted it any other way!!!

Jack - you are our hero and we love you more than you can ever imagine.

This is the INTENSE part of Delayed Intensification...

Just a quick note to let you faithful friends and family know that today was Day 1 of 4 - yes, FOUR- consecutive days of chemotherapy for Jack. It was a very exhausting day for both Jack and Anneli, as they were at The Valerie Center for nearly 8 hours. You can imagine how challenging it was for Anneli to entertain Jack as he was not allowed to eat until after his procedure--which wasn't completed until nearly noon.

Please keep Jack Jack in your thoughts and prayers this week. Send lots of positive thoughts and energy his way, along with your birthday wishes! Yes, the terrific two's are just two days away!

An Update From Anneli: Delayed Intensification

Delayed Intensification

Jack Jack has had 3 rounds of Chemo in seven days! On Wednesday July 1st, Jack started his delayed intensification treatment phase. He's been quite tired which is to be expected considering the amount of chemo he has received since then:

Wednesday July 1st: Methotrexate (via spinal tap), Vincristine and Doxorubicin (through his port)
Monday July 6th - PEG Shots (muscle injection in leg)
Wednesday July 8th - Vincristine and Doxorubicin

Jack is still a playful and positive little guy, both before and after treatment.
But he also gets tired really quickly and wants to rest...preferably outside. He's for the most part drinking well and has a good appetite which of course, we are happy about.
We have noticed that he wants to go outside a lot, which we think helps him when he is nauseous. Speaking of nausea, we give him a medication called Zofran, which helps against nausea.

On Tuesday last week, we (or actually Emma!) gave him his last Dexamethasone which he had been taking twice a month for 7 days. This is a steroid pill, so Emma has been preparing it with a pill crusher, adds water, and gives it to him in a syringe. She is remarkably successful giving him this medicine and even pretends she is a doctor! She always gives him a hug after, and Jack Jack loves that hug!

Some interesting highlights to mention since the last blog update: When Jack started his treatment, he met his 12 year old friend, Jesus, who also has ALL. Both of them are pretty much at the same stage of their treatment plan, and when we were about to leave the Valerie Center, Jesus asked when Jack was coming back. I told Jesus that Jack would be back on Monday & Wednesday this week. Jesus asked if Jack was getting PEG shots. And I said, "Yes." Jesus' response was, "Yay, me too!"

For children to respond that way is pretty amazing. Children are so positive. It was amazing that he was excited to be sharing a common experience, and also helpful to us since Jack can't verbalize his feelings.

4th of July weekend was spent with good friends in South Orange, since we can't really travel anywhere. The afternoon was spent at a festival and then we barbecued with friends! Yum. Sunday we spent at the pool!

We had a good time even though Jack is not allowed to go into a public pool as his immune system is compromised. But he still had fun playing with friends & Playdoh!

The highlight on Wednesday this past week was when Jack got to meet Comet, the therapy dog!
Comet is so amazingly trained. He didn't move when Jack tried to pick him up. Jack made a new best friend, and even shared his Cheerios with Comet!

This week he goes in for chemo on Wednesday again, and after that he gets a week off. Please continue to send Jack good energy as the risk of infection or side effects increases as the chemo dosages do also. Hoping that all of you are having a wonderful week!

Love, Anneli

An update from Anneli

It has been over two weeks since we updated the blog...and here is what has been going on…

I am happy to report that Jack has not received any chemotherapy and it has been a blessing to see him happy, running around and playing like any normal healthy 23 month old!

We celebrated our 10th wedding anniversary on June 20th and Damond and I got to go out to a local restaurant, Verjus in Maplewood, which was lovely. A big thank you to a dear friend who babysat Emma and Jack.

The following day we celebrated Father's day and while Jack was napping Emma got some special time with daddy and gave him a special plate that reads "Hands Down – You are the best Dad around” Love, Emma

Jack was scheduled to start his “delayed intensification” treatment last week Wednesday but his counts were not chemo-ready; his ANC counts only amounted to 413 and Jack’s counts have to be above 750 with the protocol that he follows to receive treatment. Despite the finger stick to check his blood cell counts Jack had a fun time with his friends Jean and Stan, who have been volunteering for over 10 + years at the Valerie Center.

He was back at the Valerie Center on Monday this week for another finger stick and this time his ANC counts were over 4000, so today he is starting his "delayed intensification." This phase lasts for 42 days with intensive chemotherapy (hence the name "delayed intensification").

Today he received four types of cancer fighting drugs:

Vincristine and Doxorubicin - which are given through his port. This is the first time he will receive Doxorubicin and we are hoping the side effects won’t be too severe as we have been told this drug can be quite "wicked". Mouth sores are common and we are praying that he will be spared these as it can be difficult and painful for him.

Methotrexate - which is administrated using a needle inserted into the fluid surrounding the spinal fluid surrounding the spinal cord. He will be under general anesthesia while receiving the Methotrexate.

And last is Dexamethasone (steroids) which is given by mouth twice a day for seven days.

It is always hard the first 48 to 72 hours after Jack has received chemo as we have to change his diapers every two – three hours around the clock wearing gloves and dispose of the diapers properly. In addition to this we have to watch him closely when outdoors as his skin and eyes are sensitive to sunlight. These side effects are among other things such as nausea, vomiting, loss of appetite…

Please keep your fingers crossed that we are back on track with Jack’s Journey against cancer and that Jack will be entering the maintenance phase at the end of August. The maintenance phase is less aggressive even though it does last for three years.

And, once again, we would like to thank everyone who donated towards Team Jack-Jack and The Valerie Walk-a-Thon on June 13th. Together our Team raised over $5,000.00. Way to go!!!

Love,
Anneli

Way to go, Team Jack Jack!!!

The rain didn't dampen the spirits of Team Jack Jack today at The Valerie Fund Walk-a-thon. For some nice pictures of the walk taken by the Herbst family, click here. Thanks to your support, the team raised over $2,500! Hooray!!

You still have time...

to sign up or donate to Team Jack-Jack!!!

The walk-a-thon to benefit The Valerie Fund at Saint Barnabas, where Jack receives his outstanding medical care, is THIS COMING SATURDAY! Please click the link to the left and register to join us on June 13th, or donate to the Team. Every dollar makes a difference. Remember what Ziggy** said:
**This quote and photo are from a great blog I've followed for a long time, The Amazing Trips. The author, Jen, is pretty amazing herself, and is on a mission to cure cancer. She just ran the Rock-N-Roll Marathon in San Diego to raise funds for the Leukemia & Lymphoma Society as part of their Team in Training. Jen took this picture at the convention center where members of Teams in Training for the Leukemia & Lymphoma Society from across the country were having an Inspirational Dinner the night before the marathon. Inspiring, indeed.

Broccoli? Really? Wow!

I visited Jack at the hospital yesterday afternoon. Anneli had lamented his lack of appetite since he was admitted on Wednesday, so I was armed with his favorite dishes from the Chinese restaurant around the corner from his house: shrimp fried rice and mixed vegetables.

Jack was receiving a blood transfusion when I arrived (to help boost his red blood cell count, which was very, very low), and was sleeping curled up next to Anneli (a benefit of the Benadryl the nurse had given him prior to the transfusion).

His nap didn't last long, though, due to an attempt measure his O2 saturation with a sensor that wraps around his toe. He stirred and was very, very angry at the technician for disturbing his slumber, ripped the sensor off his toe and tossed it off the bed. The tech apologized profusely, and Jack took comfort in Anneli's arms. A quick game of bop-the-balloon helped stop the tears and even brought a little smile to his face.

When he actually woke up, he willingly let the nurse put the sensor around his finger, played with the wrap, and seemed to like the pink, ET-like glow. The technician was impressed with his easy compliance, and promised to try that location next time.

Fully awake now, Jack perked up and sniffed the air. He excitedly started to point to the bag of Chinese food. I dished up the pints and waited to see what he would do. Broccoli! Shrimp! Cabbage! Rice! Soy Sauce! Duck Sauce! Every taste made him so happy. And watching him eat made Anneli and me happy, too.

When I left a while later, Jack still had almost 2 hours to go on the blood transfusion, and then was going to receive his chemo treatment. After that, the plan was to send him H-O-M-E (which is spelled when you are in the hospital and not said aloud...no one wants to jinx it!). Although a "short" stay, it had been a very long two days at the hospital.

As I said goodbye, I told Jack that I would give Emma a big hug from him. He reached up his arms to actually give me one to give to her. So very sweet! Hopefully he got to give her a hug himself last night.

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!