12-24-09 – Jordan Update

I got this on Christmas eve – so sorry for the delayed posting.  The following is from Tracey:

I talked to Amy yesterday on her way home from Jordan’s weekly hospital appointment. She hasn’t been able to get to her email and send out an update on what she’s been thinking to friends and family because it’s just been too crazy.

Jordan had another spinal tap, chemo, lots of fluids, and then more chemo (if I heard correctly). She said that the appointment was a little crazy – lots of waiting without a private room, which meant that she struggled to keep the mask on Jordan all day. But, she keeps saying that Jordan is just a trooper! She said that she’d finally been able to get him to eat something when they got in the car, and then he just crashed! He was asleep the whole time we talked. Amy sees that he finally lets his defenses down once he’s in the car – he’s still not a huge fan of the hospital.

This last week was the first week of Amy having to give Jordan chemo at home (4 days through his PICC line (IV) and 3 in pill form) – and Amy said that it was the first week she was really starting to feel the emotion of the whole situation. We had a bit of a chuckle about the ‘Chessum mode’ we go into during a crisis – how it is a remarkable gift to have because it allowed Amy to focus on her role and job in Jordan’s treatment and recovery – allowed her time to pull together at the outset and focus on hope and what Jordan needed. But, it seems that now is the time Amy is working through some of the grief – trying to give it completely to God, learning to rest in Him, and accepting His peace in the midst of overwhelming circumstances (She quoted John 14:27: Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.).

One of the things I keep hearing her say is that she is really struggling with the fact that it’s “ok” to put poison in Jordan’s body, but she has to wear thick gloves and keep everyone else away from it, etc. She says that all the meds are marked to the extreme – “CAUTION” all over them. She gets tearful about his little bald head at times because it is a constant reminder of the poison in his body. She said that she’s really wrestling with this and doesn’t really know how she feels about it. I know that the Moms reading this will be able to identify and pray for her effectively!

This last week had a bit of a medical learning curve attached to it. She said that Jordan only threw up twice last week (Hurray!), and that it was mostly due to anxiety over meds rather than the chemo. He’s very leery of the meds and cries when he has to take them – he gets so upset, he throws up, and then he has to take them all over again. Jordan’s a good kid – and he takes them, but how do you explain this to a little guy? He only knows that they make his tummy and body hurt. I can only imagine what that does to you as a mom. On top of the oral meds, Amy is still working with the IV chemo Jordan gets through his PICC line. She said that there were bubbles in the line at one point, and it took quite awhile to get them out without getting the chemo all over the house (all this with a 2 year old on the end of the IV). Jordan also isn’t getting enough fluids at home – he will only drink 3 or 4 oz. a day. Amy’s just trying to get fluids in him, but all of the only stand-bys aren’t working right now because all of his taste buds have changed – and because he thinks she may have hidden meds in them. She’s resorting to buying juices in different packaging (like soccer ball shaped Gatorade bottles), popsicles, etc. just to get him to drink something. The problem is that with 3 other 2 year olds in the house – they want these new fun drinks too! Amy said that they all had red and blue Gatorade all over the floor the other day – the kids were having fun but no fluids were getting into Jordan, and a lot of sugar was getting into the other 3 (another thing that Moms can identify with)!

Last Friday they had their head shaving party – the hair falling out constantly was bugging Jordan and it just had to come off that night. Amy is such a great mom! She was trying to explain what was going to happen to the kids – showing them pictures of when they were babies with no hair and how cute they looked. Telling them that daddy was shaving his head too and they would do it together! Trying to be smiley about it…but, she said that it was hard to be smiley and make sure the kids understood because they were having what Amy termed “a fear ridden night” that they were going to have to take him back to the hospital because he was starting to run a slight fever (which meant he would be in the hospital for at least 7 days), and his PICC line wouldn’t flush for an hour. After, the boys were running around touching their heads – still a bit confused about what happened to their hair. She says that Cedar keeps asking “what happened to his (Jordan’s) hair?” Amy said that she didn’t feel like she could prepare them for this, and that weighed on her. They did end up taking Jordan to the hospital the next night because of fever – but, miraculously, he didn’t technically have a fever when they arrived at the hospital, so they filled him full of fluids and sent him home.

Please Pray:
• For Amy as a mom – that she would be able to meet all the kids needs. For Phil as the provider – that God would grant him peace. For the kiddos – that they would continue to be flexible and understand what is happening around them.
• That Jordan will make it at home over these next weeks (and especially through this weekend). He does so much better at home simply due to the anxiety – but these chemo meds are really supposed to kick in this week.
• That Jordan’s hemoglobin numbers stay put (he was at 8.6, and they transfuse at 8).
• That the church finds enough donors to meet Jordan’s need for blood and platelets. To find out if you can help – please see my last note!
• That Jordan and the family will ride through this cold they’ve gotten. She said that Jordan’s nose is still running a bit, that Phil has a cold, and Cedar is congested. Amy said that she knows that she’s done everything she could possibly do to keep him at home, and that if he goes back into the hospital she won’t be as disappointed as she would have been – but, we’d all still rather he be at home.
• That Amy would know Jordan’s meds, how they affect him, how much he needs, when he needs them, etc.

Since it’s Christmas – may we remember that God sent us peace and mercy through the birth of Christ. Please pray that God would give the whole family an extra portion of that peace and mercy. The “oldest” of the Shahbaz quads was named Jeremiah Emmanuel (God with us) as a reminder that God truly was with this family and these kiddos – pray that they would continue to feel God’s presence and that they will always continue to see “God with us” in their lives.

Related posts:

1. The Last Week as A Couple At this time next week we will be at Sharp Mary Birch Hospital for the scheduled caesarean unless the babies...
2. They’re Born! They’re born! Here are the stats: Noah Eugene – born 6 lbs 6 oz. and he’s got blond hair. Jesse...