60 Hours of Freedom!

Good news! The doctors agreed to discharge Jack last night so that he could spend the weekend at home with his family before returning to the hospital on Monday to begin round two of chemotherapy. Emma was ecstatic to see Jack "unplugged" from his IV. "No more medicine for now," she told me.

Anneli reported that Jack slept well in his crib for most of the night, joining Emma in her bed for their last few hours on Sleepybye Lane. A (fingers-crossed) quiet weekend is before them, hopefully fever-free with lots of cuddle time. Keep sending positive thoughts and prayers their way as they return to the hospital Monday morning.

Yesterday's visit.

I had such a great visit with Anneli and Jack yesterday. For having just had a leg muscle injection a few hours earlier, he seemed to be in pretty decent spirits. He honored me by allowing me to feed him his mac and cheese (he ate a lot!) and we all shared a few fries. We even played a little peek-a-boo and had a blinking contest. He won, of course. After some music time on the floor with Mom I had to go, but it was really comforting for me to see lots of wonderful signs of Jack just being Jack. He is a true fighter. I'm also amazed and humbled by what an incredibly strong and brave woman you are, Anneli. I'm proud to call the Bailey family our friends. I hope the remainder of Jack's hospital stay is brief and thank you for letting me share some time with you. See you soon.

xoxo,

Nicole

Do you want fries with that?

Jack's appetite is back! Yesterday he ate some macaroni and cheese, and this morning he feasted on a waffle. Anneli said he even enjoyed McDonald's twice in the last week, which means he had more McCalories in seven days than he did in the last seven months. But honestly, who will hold that against him?!

Jack received a blood transfusion this morning because of his low hemoglobin level (normal is 11-12, and his was 7), so we hope that provides a good boost to his system. He remains tired from the chemotherapy and is sleeping a lot. When he is awake, he wants to play, and he has a very positive disposition. His energy burst will last ten to fifteen minutes, and then it is time to rest and drift off to dreamland.

Unfortunately, he is among the 20% of leukemia patients who experience severe leg pain. So although he wants to walk, it hurts to take more than a couple of steps. That leaves him spending much of the day snug in daddy or mommy's arms, the perfect spot to catch some zzzzz's.

The doctors are optimistic that Jack might be discharged soon. Please keep the Bailey family in your thoughts and prayers as they prepare to begin the next chapter in Jack's Journey. Be sure to sign his guestbook to let him know you are thinking of him!

Chemo update and family pictures

Anneli provided the following update this evening and passed along some pictures. You can't help but return Jack Jack's smile, can you?

Jack is doing well after his chemo injection this morning. No rash, no respiratory issues and no high blood pressure so we are pleased. We just have to pray that his blood count goes up or he might have to have another blood transfusion tomorrow.

Grandma!

Jack has had his injections this morning, it went well and he powered through them.

Last night Grandma came to visit and cheered everyone up. Playing dress up in Grandma's hat was especially fun!

A note from Anneli

Good morning-

I hope you had a good night's sleep. Jack slept like a baby:-)

I did not get that much sleep sharing the crib with him but just seeing him sleep and not having any pain is so wonderful...

We will soon get more pictures from the hospital where you can see how well he is responding to the chemotherapy.

He is an amazing fighter that wants to play. Yesterday he had music therapy and then we had the Bailey Family Band at the hospital where Emma, Jack, Damond and I were playing instruments and singing.

He does get really tired after about 15 minutes of playful activity which is normal. He is always excited to see Emma and she always helps us with suggestions on how to get him to eat or make him smile.

Yesterday, she suggested that Daddy should try the food when Jack clearly did not want to eat, and then we got him to eat three spoons of food. She also gave him a chocolate covered cracker and told him how much she loves him and that he is going to get better.

All three of us (Damond, Emma and myself) got to see the Valerie Center where Jack will be coming as an out patient for the next three years - You can check it out by clicking here. They have a wonderful staff and wonderful environment for both Jack and Emma (they encourage siblings to come along).

This morning Jack is going to get his chemo drug injected into a muscle using a needle, which we hope won't hurt him too much as the magic cream has been applied on his legs already. This is in addition to the chemo drug he takes orally twice a day. Think of him and send him good energy...

Love, Anneli

Did you know...

There is another blog, Friends of the Bailey Family (see tab to the left under "My Blog List"). That is where everyone supporting Jack's Journey can go and find ways to help. Because we would like to keep JJ as more of a journal where friends and family can go to for updates about Jack, we've created the "Friends" blog to enable friends of the Bailey family to best organize and support them.

On the "Friends" blog, you can see the entire calendar to find who is providing meals and see other upcoming events (like the community blood drive at Congregation Beth El on Irvington Avenue in South Orange this Sunday from 9:00 am - 1:30 pm). If you would like to input events on the calendar or post on the "Friends" blog, please contact me at careymerrill@yahoo.com and I will add you as an author. Thank you for your support!

A very quick post to say...

Hip Hip Hooray! Jack was fever-free today!!!

Superbowl!

Yay, some Dude Time on Sunday with Daddy! Jack enjoyed spending Sunday night watching the Superbowl and.. Shhhh... trying some McDonalds.

Good Morning

Jack is doing well this morning after a good night's sleep. He is being very strong and is in good spirits, flirting with the nurses, waving and giving High Fives! Please see also the Friend blog for Silvia's update from her visit last night. Speaking of the Friend's blog I just want to point out that it and the calender are great tools if you are wondering what you can do to help.

Taking the fight to the enemy

Today, with his mommy and daddy by his side, Jack fought back. He received his first round of chemotherapy drugs orally, injected into his portacath, and injected into his cerebrospinal fluid through a spinal tap. When I spoke with Anneli this afternoon, Jack was resting in Damond's arms. He had eaten, which was a good sign, and although he was a little fussy, we agreed that he had good reason to be!

Eleanor Roosevelt said that "you gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." Today the Bailey family did just that.

Round One

Jack is scheduled to begin his first round of chemotherapy Monday morning. He still has a slight fever tonight, and is receiving another blood transfusion to give his immune system a boost before receiving the first chemotherapy cycle. Please keep him and his family in your thoughts and prayers.

You can access additional information about chemotherapy here and here (scroll down the page on the second link to get general information about chemotherapy for treatment of ALL).

Sign Jack's Guestbook!

And so we begin...

Jack's journey began on Wednesday, January 28, 2009, when he was admitted to the hospital with a high fever. On Thursday, his parents learned that their beloved 18-month-old son had acute lymphoblastic leukemia. On Friday, Jack received a blood transfusion to boost his immune system, and today he underwent surgery for the placement of a portacath in his chest, through which he will receive chemotherapy. Our thoughts and prayers are with him and his family.

This blog is an attempt to centralize information for friends and family, as it can become very exhausting for Anneli and Damond to relay to all of us what is happening with Jack. Hopefully putting information here will ease that burden a little. In addition, we will chronicle Jack's Journey so that someday he, too, can read about how brave he, Emma, and his parents were during this challenging time.

I also know there are many friends who want to help the Bailey family, and I hope this blog can help organize us. Using the calendar link on the left, we can plan and provide meals and other support over the coming months. Also, please share links to other websites or blogs you find helpful, and I'll add them to the "blog roll" on the left. Finally, if you are reading this blog, you are part of Jack's Journey. While we are all certainly on a path we never anticipated, at least we are on it together.