12-16-09 – Jordan Update

Tim got to spend the afternoon with Jordan and Amy today.  They were at the hospital as today was the start of Jordan’s next round of chemo.  A couple things of note…

First, answered prayers.  Jordan had a great week.  His body recovered really nicely, and once the steroids were out of his system, he really became himself again, in almost every way.  The only current signs that he’s been through a lot are his muscle weakness and his hair loss.  His sweet personality is back, his hunger is normal, and the whole family just generally had a good week.  I’ve posted more about it below from Tracey’s note (Amy’s cousin) on Facebook.  Perhaps most miraculously, Jordan’s immunity recovered well during his week off from chemo.  They took a blood test today to see how his immunity was doing (the ANC – absolute neutrophil count).  His count last week when he completed chemo was around 220.  It needed to be above 700 today for the doctors to approve him beginning the next round of chemo.  It was 890.  Amazing.

Tim reports that Jordan was really great in the hospital today – well behaved, calm, and in very good spirits.  It was a long day – about 10 hours with the spinal tap, the chemo, blood tests, and everything else.  Tim said it was really good to see Jordan being himself again.  They played with cars and watched some videos together, and it sounds like Tim did a good job of distracting him.  I’ve posted some pictures below that Tim took while they were together.

Tim also said that Amy was in good spirits today.  She is optimistic and doing well after the good week.  Even though 50% of kids end up back in the hospital during this phase of chemo (usually due to their compromised immunity), it almost seems as if the worst is over.  I think the chemo is now less daunting than the steroids…

Jordan really is losing his hair.  Let’s pray that’s the only major side effect of chemo that he experiences.  Sounds like next week, Phil, Jonah, and Jeremiah are all going to shave their heads with Jordan.  Solidarity.  Hopefully, we’ll get pictures. 

Here’s (most of) the note from Tracey (she wrote it yesterday) – with prayer requests at the end:

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The second phase of chemo is a completely different chemo medicine – one that is, supposedly, much tougher on the system. According to his doctors, 50% of kids end up back in the hospital during this phase of treatment, as it will knock out what remains of Jordan’s immune system. He is expected to need blood and platelets frequently during this phase (more about that later). Jordan will be at the hospital tomorrow to have a spinal tap, and if his ANC (absolute neutrophil count – which basically measures the amount of immune system he has left) is above 750, he will start the second phase of his chemo treatment. He will have one round of chemo at the hospital tomorrow, and then Amy will administer chemo for 4 days at home through his PICC line….so, it sounds like it will be 5 days on, 2 days off. He is scheduled to be back at the hospital every Wednesday.

Amy said that this week has been a big relief. The good news about his blast count last week, coupled with a good week for Jordan, has allowed the family a bit of breathing room before the second phase begins. After being released from the hospital last week, Phil ran out and bought a Christmas tree, and they were able to decorate it together as a family and enjoy one another. It’s been a good time for their family to appreciate the little things in life. Amy said that a couple of days ago, all four of the kids were dancing to “The Bear Necessities” and that she and Phil were just finding so much joy in their kids. They had their family Christmas with Pa, Grammy, Great-Grammy and Great-Granddad on Sunday – as they don’t know how Jordan will feel on Christmas day. However, the greatest Christmas miracle is to have Jordan’s personality back! The remission diagnosis allowed Jordan to get a reprieve from not only the chemo, but the prednisone (steroid) which was making him clingy, cranky, aggressive, sleepless (which meant that Mommy and Jonah didn’t sleep much either) and ravenously hungry all the time. Jordan’s giggles and inquisitiveness returned this week – and this has done a lot for his family! We are thankful.

After talking with Amy today, it was hit home to me that just because he is in “remission” does not mean that this precious little boy isn’t still suffering from the effects of the chemo. Amy & Phil say that this is the hardest part – the fact that they have to watch their child suffer. His last week of chemo was especially difficult – he was so uncomfortable and upset, and there was little that could be done to ease his pain. Amy says that she couldn’t even go to the bathroom without him standing outside the door saying “mommy, mommy, mommy.” His hair is now starting to fall out, and he has a hard time chewing anything hard. He can still walk around and play with his siblings, however, if he does get on the ground, he can’t get back up. In the past, he’s just yelled for mom’s help, but in the past week, he’s had the energy to make it into a game and go crawling to mom’s legs and say “Mommy, I got you!” The hard part of this is that just as he is starting to feel like himself – he has to go back on the chemo tomorrow.

So … here is a long list of prayer requests as we start Phase 2!

Prayer Requests from Amy:
• Amy says the number one prayer request for their family is for Phil and the pressure on his shoulders. In addition to his work at the church, Phil works two other “side” jobs to make ends meet for his family. The addition of a child with cancer brings extra worry, but also additional financial strain. Pray that he would be granted peace and given grace as he provides for his family. Please make this your prayer priority.

• Pray that CCS (California Children’s Services) will cover Jordan and assist with the medical expenses that their PPO won’t cover.

• Pray for supernatural protection for Jordan from infection. Pray that he will be part of the 50% of kids that can remain at home during these next 2 months of treatment and keep a normal schedule.

• Pray that Jordan can still have glimpses of his childhood in the midst of all this.

• Pray that the talk around Jordan remains hopeful.

• Pray for grace, hope, patience, flexibility and protection throughout the next 3 years.

Additional Prayer Requests:
• Jordan is still, understandably, very anxious about everything to do with the hospital. Amy said that when they drove up to the hospital last Wednesday, Jordan was excited to see the Christmas tree and all the lights outside…but, the second they walked into the hospital, he started screaming. Pray for that God will calm his fears and give him peace.

• This family needs SLEEP! Pray that Jordan will be able to sleep peacefully, which will allow Amy, Jonah (who shares a room with Jordan), and the rest of the family to get the sleep they need to remain healthy!

• Amy is struggling with allergies, and is still wearing a mask when she comes in close proximity to Jordan. Apparently, Jonah also has a runny nose…which is a bit of a concern. Pray for relief from allergies – and that these symptoms are just allergies and not colds.

• Pray that all the kiddos would keep responding well and with maturity beyond their years. Pray for wisdom for Amy as she continues to explain to them what is happening with Jordan.

• Pray that the prayer support Jordan’s illness has generated will continue throughout his full 3 years of treatment.

Phil & Amy’s church is coordinating the first wave of blood and platelet donations for Jordan, as he will need both over this next phase. If you go to Life Bible Fellowship and have an O+ blood type, you will be hearing more about this as time goes on. If you don’t go to the church, hang tight! We will send out another call if/when Jordan is in need. Remember, there are 3 ½ years ahead of us where we may still need you!

Phil’s friends are in the process of setting up a foundation of some sort to help ease the financial burden of Jordan’s cancer treatment. Things are still in the works, and I will update with specifics as soon as I have them.

Thank you so much for praying and for loving this family! I know that they feel peace knowing that Jordan is being prayed for at every moment.

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Jordan smiling

Jordan playing

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