Gift Of Life

A little time, a little money...I found a way to spare both in the hopes i can save someone's life. 
i wish i could be the match for Ian, but someone else might be!

visit marrow.org and just take one minute to see how every single person adds to the possibility of hope. what an AMAZING time we live in that this is an option we have!!
I'm inspired by my darling Ian, and sweet Gwen; and the pure gift of what a healthy life is.
 i joined...maybe in 30 days, or 30 years from now i help give that gift. 
Please consider for yourself!


no mistakes

Read this post on a friend's blog, whose family is experiencing their own painful trial of waiting on God. Her words, and the blog she linked to, kept me up half the night...sobered in sad thoughtfulness. I left this comment on Jamie's post, and thought i'd post it here as well.

Ended up looking over almost the entire blog about Tripp, thinking about him, the preciousness of his existence, the testimony of Courtney, and how we have the hope of knowing there is no wasted life. Baby Tripp had a very specific purpose, though the eyes of the rest of the world may have seen his life as simply unnecessary. 
The suffering and death of babies has to be so agonizing to the Lord...even more so than for me, for us (though my human mind can't even comprehend it). And from that perspective i have to know that there's an infinitely greater eternal work happening.
I don't know. I'm also realizing that it's not my job to figure this all out but just to trust that somehow it is good, and that He makes all things beautiful.

Just so you know, Tripp died on the 14th, just a few days ago, his memorial was yesterday. He is free and whole...how marvelous, how wonderful.

And the Lord loves Ian...and He doesn't make mistakes.


News from Ginger

"Today was a better day. We are now back on the hematology/oncology floor and out of the ICU, I forgot to mention that we moved here yesterday. Ian wasn't as anxious, they kept his doses the same as yesterday, so I think it helped that he went without a wean for today. He also enjoyed his thickened milk and baby food and seemed to do well with his physical therapy. The doctors are keeping us here until he can be weaned off of the oxygen, which may take a couple more days. He is on a very low setting, but needs it to maintain his saturations for now.

Julie brought Henry to the hospital so we had a nice visit, and he seems to be doing fine with his cold. He is hilarious, he just walks around the cafeteria screaming so people will look at him, and then he makes friends with them. Julie is taking excellent care of him and it looks like he is having a great time at her house playing in her beautiful backyard with her dogs, who seem to really like him.

Thanks to everyone for continuing to remember our family! Love to all."


latest from Ginger...

“Had a very nice weekend seeing Joey and Caid (and Henry) thanks to my mom and dad who both stayed a night with Ian in the hospital so we could spend some time together. We also got a visits from Grammy Wren & Colleen, Auntie Trisha & Micaela and Auntie Julie and Uncle Joel.
We never really made it out if ICU. After spending a few hours on the hematology/oncology floor, they decided that Ian was working a little harder at breathing than they were comfortable with, so we got moved back to ICU. They have planned to transfer us a couple of times since then, but it hasn’t happened yet. He had an assessment from a therapist for feeding on Friday that he didn’t really pass, so he was restricted to 1 ounce of baby food twice a day for practice and no liquids or solids. He was assessed again this morning, and continued to have a bit of trouble, so they will do a swallow study tomorrow to get a bit more information. The swallow study involves drinking barium and watching with an X-ray to make sure he doesn’t aspirate anything while swallowing. This is apparently a typical side effect from being intubated for such a long time and just being overall weak from being so sick, as Ian was.
Unfortunately, it looks like we will be here a bit longer than I had been thinking and hoping for as of last week. He is continuing to get stronger every day, we are working hard at playing to try to get strength, stamina and coordination back.”


Wren and i went to Phoenix and saw Ian this weekend...i'm tired. we only stayed for one night, but holding him far outweighed the time and energy spent.
i loved feeling his tiny hand hold my finger tightly as he slept. i hated seeing him so drugged, feeble, sick and sad. i loved seeing him smile for his mommy. i loved hearing Henry laugh when he saw us.
i hated to leave.

i drove out of Phoenix today with an aching heart and overwhelmed mind, and arrived in LA emotionally and mentally raw. thrown straight back into the tumult of life in my family, it's only within the last hour or two that i've really realized how frayed i am...thoughtless, short-tempered, distracted...and finally crying in the bathroom like a baby. i'm finding myself sorrowful and grieved.
God's going to make this all okay, but right now my mind and heart just aren't handling everything very well.

i miss Ian and Henry and the rest of the family already, and i can't ask you enough to keep praying for our little precious boy...



Ian was extubated today, and is slowly continuing to come off of his sedatives (and slough of other meds). 
And Ginger got to finally hold him today...

We're feeling very thankful.



latest from Ginger...

"Everything still okay; however, since coming off of the ECMO, Ian has had trouble maintaining his temperature and has had the low heartrate. Although his heart function has continued to improve, his heartrate stays low and that and the body temperature don't really make any sense to doctors or "fit" with other things going on. 
It cannot be attributed to any of the drugs that he is on and they have pretty much checked everything they can at this point. The doctors from the beginning could not really understand why he had respiratory failure, since his lungs were sick, but never looked bad enough in the chest x-rays to have needed life support like ECMO for the lungs.

I asked if the weird bloodwork -specifically the low hemoglobin (which is the red bloodcells that transport oxygen) could have explained his trouble saturating, but doctors have since given him many blood transfusions of hemoglobin and bloodwork has had normal counts for a while now. Yet he still needs a lot of support from the ventilator and didn't tolerate much weaning of the oxygen settings yesterday.

Doctors here are very honest in that they may not have any answers for this, since they have checked on almost every possible explanation. They plan today to check his adrenal function, since one number on his thyroid function was slightly low today, when it was previously normal. They said this often can happen with very sick kids, which is what Ian is, but would investigate it anyway just to see if it yields anything. At this point the Endocrinologist is the only specialist who hasn't been consulted on Ian's case.

Please pray for either a mysterious improvement or answers (less likely) for the doctors, so they can help him improve. The important thing is that he is still stable on the ventilator."


Ian's Progress

Ginger posted this about an hour ago...
Lots of progress since I last posted. Ian had an echocardiogram yesterday and the cardiologist was very pleased. His heart is functioning much better now. He also had an MRI and a spinal tap to look for any Central Nervous System evidence of HLH. The doctor said those may not show anything, since he has been on the treatment for several days now, but ordered them anyway in case they may be helpful. For the spinal tap, they gave extra sedation and pain medication for, so he didn't even wake up for it, which was a huge relief for me. We will hopefully have the results of those tomorrow morning. 
I was able to talk to the hematologist about some questions I had regarding the bone marrow transplant process. They are running the genetic test on Ian (which takes 3-4 weeks for results) to determine if they can find the mutation for HLH on the genes that they currently know about. This test is extremely expensive, which is why they are not running the test on the rest of our family. If they can identify the gene (best case scenario, as opposed to it coming back normal, which can mean that the mutation is on a gene that they haven't identified yet) then they can run a single gene test on Caid and Henry to see if they have the mutation or not. The best case scenario then would be that neither Caid or Henry have the mutation AND one of them is a bone marrow match. Siblings have the best chance of being a match, since they have the DNA from the same two people as Ian (parents!) as opposed to Joey or I, which only share half our DNA with Ian. However, if Caid or Henry have the mutation too, their bone marrow would be equally faulty and they would need a transplant too. Also, if Ian has the mutation on a gene that hasn't been identified, then it would not be identifiable on Caid or Henry which would leave us to a scary waiting game to find out if they have this same syndrome which could and would eventually be triggered by a virus. 

So, this is what we need prayer for:
1) Gene mutation for Ian's HLH identified
2) Caid and Henry don't have HLH
3) Caid or Henry are a match for Ian
4) Bone marrow transplant takes and is successful



We, the family and friends of the family Adams (those being, Joey, Ginger, Caid, Ian and Henry) now have a Twitter account:https://twitter.com/#!/supporttheadams. Please follow us and stay updated on needs and information~~Thank you.

Ian update...

Ginger wrote this morning...
"Ian is continuing to improve, Praise God! He still has a very low heartrate and some other heart issues, they will be doing another echocardiogram to determine function. They also will be doing, probably tomorrow, an MRI and spinal tap to look for any Central Nervous System evidence of HLH. They will be sending blood samples today for the genetic test, but it takes several weeks to receive the results. He gets his second round of chemotherapy today and another higher dose of steroids. They have begun some weaning of the drugs, but he is still very sedated since he is still on the ventilator. He is still very sick, but is no longer the sickest kid in the PICU!

Treatment for Ian that we are getting right now is only to to suppress the life threatening inflammatory process that HLH triggers in response to the virus he caught. Remission is always temporary and the only way for him to be cured is to receive a bone marrow transplant. Please pray fervently for this. From information that the hospital library provided to me on HLH, I read this morning that even with treatment, only 21-26% of patients with (the genetic) HLH survive 5 years. The only hope for a cure is a successful bone marrow transplant.

Joey and Caid went home to LA yesterday and will go back to work and school tomorrow. Please pray for Caid, since I think the family separation will be hardest on him. Please also pray that Henry will continue to get better and stay well. Additionally, please pray that Caid and Henry do not have HLH. They will likely be tested after we get Ian's results, but right now doctors don't know all of the genes that can carry the mutation, so the test really only carries weight if it is positive on the genes that they know about.

Thanks to everyone for all of the love, prayers and support."