Looking back, looking forward

Nearly one year ago, life as the Bailey family knew it changed. When you are caught up in the daily reality of battling cancer, it is amazing to look at the calendar and find yourself already at this point. But even more incredible is the fact that these 365 days are but a fraction of Jack's forecasted battle against leukemia.

As many of you know, the last few months have been rocky for Jack. Illnesses that are merely annoying for many families can result in hospitalization, the cessation of chemotherapy, and isolation for a normally social little two-year-old who is fighting cancer. A fever on the eve of Thanksgiving had Anneli and Damond concerned that they would spend the holiday in the hospital. Fortunately the doctors consented to release him and let the antibiotics work their magic from the comfort of his home. They were not so lucky after Christmas. Jack spiked a fever on December 27th and ended up ringing in the New Year at Saint Barnabas. His nine-day hospital stay quickly reminded everyone of how vulnerable he is, as he was too sick to even receive chemotherapy. He had another overnight stay at the hospital a week later when his temperature shot up again, which had many people wondering just what 2010 might bring.

But with the bitter came the sweet: Jack had fun celebrating Emma and Anneli and Grandma Marcia Bailey's birthdays in November; he enjoyed a visit from his Swedish Uncle, Aunt, and cousins over Christmas; and he loved having Anneli's parents (his "mormor och morfar") around for a five-week reunion (despite spending 11 days of it in the hospital).

Jack's counts are currently back to where they need to be, he is back on track with chemotherapy, and the Bailey Bunch may pause to look back at the last year, but they are more focused on pressing forward. Thank you for continuing to join them on this journey.

October Update from Anneli

We know that it has been a really long time since we updated the blog and we apologize for this and still hope that you will continue to follow Jack's Journey.

We have just had more juggling balls in the air than we normally do so we dropped the ball of updating the blog...but we are now back on track again and our goal is to update the blog more frequently.

October was a busy month for us. We did some fun things such as visiting an apple orchard where we went apple picking. It was so cute to watch Emma help Jack pick apples by holding down the branches so that he was able to reach the apples.

Jack and Emma are both enjoying school. Jack is slowly getting over his separation anxiety and Emma is learning tons of new things every day. We are amazed over how much they both learn and grow from one day to another and we try to cherish every moment.

Halloween was lots of fun with carving pumpkins, hanging spiderwebs and going trick or treating. Emma (Snow White) and Jack (Pirate) celebrated Halloween by going to a party at the Valerie Center on Friday October 30th and then we went trick or treating in both South Orange and West Orange on the actual day of Halloween. The staff at the Valerie Center was all dressed up as different types of candy.

Jack is still in his first stage of maintenance - Each cycle lasts for 12 weeks and this is week 11. Jack has a procedure with a spinal tap next week.

We are often asked the question how Jack is doing and how he is handling the maintenance stage. Damond and I have talked a lot about how fortunate we feel that Jack is a strong boy with a positive outlook on life, and how well he is doing at this stage of his treatment. It is amazing to see how he is used to getting a finger stick every two weeks and getting chemo through his port every four weeks. Last week he did not even cry as they did a finger stick.

This being said, it is still hard to wake Jack up every night and give him his medications on an empty stomach at around 10:30 - 11:00 PM before we go to bed.

The biggest challenge is that every Wednesday he has to take a second chemotherapy tablet in addition to his other medication. I will admit that we forgot this medication one week and I felt like the worst mother ever. The wonderful and supporting staff at the Valerie Fund assured us that this happens to every family and that it was ok, but I still felt bad.

I often look at Jack when he is sleeping at night and still find it hard to understand how any of this could happen and it still feels like a bad dream that does not go away. I know that as a parent you always worry about your children no matter what, so this is part of being a parent.

We still feel very fortunate to be surrounded by love and support from our family and friends as we could not do this without you all!!!

Love,
Anneli

September Update from Anneli

September Update

Since Jack is in the maintenance stage we have felt a little bit more relaxed, even though living with chemotherapy still has its challenges. We were able to do the following fun things in September:

Over Labor Day weekend, we went to Ocean Grove for the day with good friends. The weather was beautiful and Emma and Jack enjoyed playing in the water and the sand. We were also fortunate to go to a carnival in Central Park with Grandma Bailey. Emma and Jack had lots of fun with the rides, and Jack in particular loved the train ride--he went on it five times!

Thanks to wonderful friends and Jack's ANC count being over 2000, we were able to go on a small four day vacation to Connecticut, which was lovely and what we so needed as a family. Spending time together was well deserved and we came back with our batteries re-charged.

Last week was special as Emma and Jack started school. It is Emma's third and last year of pre-school and it is Jack's first year of pre-school. Look at how grown-up they are!

Emma was happy to see her old and new friends and to meet her new teachers Mary-Beth and Louise.
Jack is slowly getting used to being dropped off and getting to know his four new friends. He is in the young two's class and there are five children (two boys and three girls) in his class with his two teachers - Judith and Rose.

This week Jack has a chemo treatment on Wednesday. I spoke to his nurse Kristine today and she is excited that he is doing well but she misses him and looks forward to seeing him again tomorrow.

Please enjoy the pictures from all the above. Thanks for your continued love and support!

XOXO
Anneli

The Final Phase

Jack officially entered the fourth and final phase of his chemotherapy regimen today, called Maintenance. Each Maintenance cycle lasts 12 weeks (84 days) and is repeated until 3 years from the start of Interim Maintenance, which means Jack is scheduled to complete chemotherapy in April 2012. Over the next 978 days, Jack receives chemo on a strict schedule, taking Mercaptopurine every day by mouth, Methotrexate by mouth once a week, Methotrexate once every 12 weeks intravenously, Dexamethasone twice a day for 5 days each month, and Vincristine once every 4 weeks. In addition, Jack will have regular lab work to check his blood counts, bone marrow aspirations to see if the leukemia continues to respond to treatment, and spinal taps to check for leukemia cells in the spinal fluid.
We celebrated Jack's completion of Delayed Intensification and entry into Maintenance with a champagne toast this afternoon (the kids raised their juice boxes), and every declared "Cheers!" It's hard to believe how far he still has to go, but truly amazing how far he has come. Here's to you, Jack!

For family and friends who couldn't make it Sunday...

And also for those who enjoyed the party, click here for another slide show of Jack's special day!

Jack's Birthday Bash

After suffering a delay due to rain last weekend, friends and family celebrated Jack's second birthday this afternoon at the Bailey Bungalow.** Sporting a handsome haircut and stylish blue and yellow clothes that matched the decorations, Jack was SO excited for his party. Balloons! Bubbles! Music! A Ball Pit! Delicious food! Presents! Cupcakes! Frank's Ice Cream truck! It was every two year old's dream come true...especially since this party didn't include a chemo cocktail. As Jack blew out his candles with such joy in his face, I think we were all making the same wish for him: health and happiness to you, dear, sweet, precious boy!

Click here and enjoy the slide show!

**Actually, they live in a Colonial, but bungalow had a nicer ring to it!

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