1-25-10 – Jordan Update from Amy

From Amy:

Hello All!  Happy New Year!

I know it has been forever since I have sent an update.  I think I was hibernating a bit and kinda didn’t know what I was thinking….and knew my mood impacts the “tone” of the update.  Also you feel like once you say he’s “doing good”, it will all turn on you and then you will be disappointed that he is doing worse or people will think this 3 year journey is over as he is in remission and “doing good”. I know it is not about how I am feeling…but it’s hard to simply report Jordan’s symptom’s/adjustment to chemo.  Also, retelling how Jordan is doing makes it all the more real so sometimes it is easier to just move onto the next day.

So to finally get to how Jordan is doing…he is doing great!  We were prepared for Jordan to be “bad” over Christmas like he was when he first came home from the hospital in November.  We were really thankful that he did not have to end up back in the hospital like 50% of the patients during this treatment phase.  It was an amazing Christmas present to be together for Christmas!   He had more energy than we anticipated and has slowly gained back some of his strength and energy to be able to play outside (of course we avoid the dirt because his counts are still really low).  My good friend who is an oncology nurse helped me understand that Jordan was really sick from cancer when he was admitted to the hospital in November.  Now that he is in remission, all the bone pain/cancer pain is gone and he is dealing with the effects of chemo.  We didn’t know what his pain, difficulty breathing, etc was coming from prior to being admitted to the hospital and so he was left without treatment and suffered greatly.  When I look back, I am so thankful that the long time of miss-diagnosis did not lead his cancer to spread.  I did not clue into any of that initially…but another reminder that God had His hand on Jordan in protecting him from the cancer spreading.

So the info we got at the hospital was correct, the first month is horrible and it gets better from there.  I held onto that hope but also did not want to get discouraged if it got “horrible” again.  There is comfort now that comes from experience of knowing how to manage Jordan’s side effects from chemo. Unfortunately, the lack of info/communication from the medical team is often the most difficult piece to deal with as your child suffers while you try to figure out what pieces of his medical puzzle were not handled and try to put them back together.

The kids are rough housing together again and Jordan holds his own.  I am hovering less over Jordan as he has a fairly stable gait.  We are more comfortable with the PICC line after 4 episodes of not being able to get it to flush and all the drama that ensues after that.  Now we are at a stage of weighing pros/cons of Jordan getting out and wearing his mask…but the busyness of of quads leads you to the comfort of a familiar routine at home.  I envisioned the 7 months of intensive treatment to require help like we needed when the kids were babies.  So I am thankful to be in a stage now that I can handle/keep them safe on my own if I need to (ie before we needed one person assigned to Jordan).  But mostly, I am so gratefully Jordan is not suffering as he did in the first month which made him want “mommy care” 24 hrs a day.

I am thankful to be out of the stage of wondering if another one of our kids will get ALL, wondering if our kids will be able to do the things I remember doing as a child (camping by the beach seems a long way away), wondering when every symptom that Jordan experiences does not have to analyzed/taken so seriously (ie rosey cheeks don’t freak me out that he has a fever and we will end up in the hospital), or not think about germs so much and worry about the impact on our kids in hearing “don’t touch that, it’s dirty” and using hand sanitizer all the time.  Wish I could say I put my trust in God each step of the way…but really…I am challenged by Jordan’s example of living life like a kid…not a kid with cancer.  Jordan’s example of not being fearful, not bummed that he can’t go out on special outings with mom and dad like the other kids go to the store, etc, or mater of factually saying “Grammy I did not spit-up today”…challenge me.  Watching him go up my parents stairs this weekend 3 times amazes me…a kid who came home from the hospital in Nov. so weak that he couldn’t even get himself off the floor, now pushing on his atrophied legs to get up the steps…challenges my faith, hope, and moves me once again to be so grateful for God’s protection and making Jordan into who he is.  What amazing children Phil and I are blessed with…I am challenged to be a better mother/wife/person through their personalities/character.  My main prayer is that my peace/mood would stop being based on how the kids are doing.  It is too crazy on Phil, kids, and grandparents, etc.  I should have learned these lessons already…but I know I need to mature into a woman who is modeling to her family where her confidence, hope, trust comes from.  I so want to be free of the anxiety that comes so quickly the minute his PICC line does not flush, when he is squirming and looks like he is going to throw-up, when failed scheduling causes you to wait until 2pm to allow a 2 year old to eat after having to have a scheduled spinal tap.

At night we sing Jesus Loves Me and it makes me cry because Jordan and Jonah sing “little ones to Him belong, they are weak but HE is strong.”  I so badly want that to be my confidence…Jordan is weak but God is strong…no matter if it is a “good day” and Jordan is able to be a 2 yr old or “bad day” and he is suffering like a child with cancer.  Jordan is a really shy, insightful, interested, direct, and determined kiddo…I am so thankful for the character I see in him and all of our kids.  I am so thankful for Phil’s strength, empathy for Jordan, example, hard work and sacrifice to take care of all of us and provide for the many needs.  I am so thankful for the 1,112 facebook members that are praying for Jordan.  I am so thankful for the meals that have come that have encouraged us to sit down as a family and eat together…and the amazement of seeing the kids eat things I gave up on trying to get them to eat and the veggies they have eaten so they can have the yummy dessert at the end=)  I am thankful for the guys that cut our lawn and rental houses lawn and took a load off Phil.  I am thankful for all the bald cold heads out there that think of Jordan when they touch their fuzzy heads=)  I am thankful for  all the thoughtfulness and creativity in finding ways to support us.  I am thankful for the meal/blood/information coordination…wow!  Thankful for all the trips down to CHLA, finding your way, paying for parking, and successfully or unsuccessfully (we know it is a crazy process!!!  thank you!) giving platelets or blood for Jordan or other kiddos that need it.  For all the encouragement cards, calls, emails, prayers.  Wish Jordan could understand more about all the people that deeply care about him and are praying and rooting for him.  But your support helps Phil and I and our families be filled so that we can give Jordan what he needs.

I feel like the hallmarks of the weeks are when Jordan’s episodes of poop issues/nausea decrease.  Also when we are able to stay on top of dehydration as he often does not want to eat or drink.  The HUGE relief in both of our eyes when we see our car in the parking structure at the end of the weekly clinic day and hearing Jordan say “I did it”.  Then finally being able to let him take his mask off and finally seeing him taking a nap on the ride home and knowing his guards are down and can relax as we are heading home.  Another high of the week is going to my parents house for a “special treat” to celebrate how brave Jordan was at the hospital that week and how well the other kids helped Jordan and mommy.  The other hallmark is when Jordan can say “no band aid today” which means…”I didn’t have to have a spinal tap this week and not be able to eat before anesthesia”.  Also the relief that comes in his eyes depending on the color of the liquid medicine as he knows which ones “taste yucky” and which ones “don’t make me spit-up”.  He looks forward to sitting on his Dad’s lap when he needs chemo meds or PICC line chemo as he gets to watch dinosaurs on Dad’s phone.  He will repeat “mommy and Dr. G can touch the PICC line but not Jordan or other kids”.  He is an amazing boy and we are so thankful for the balance he shows in understanding what is going on, but not letting it phase him.

Thank you so much for your sincere care, love, and prayers for our courageous little boy and for our family.  We are deeply touched, grateful, and blessed by you!  Continue to pray for his bodies strength to heal, endurance through chemo (3 years of treatment) and to be protected from sickness and bacteria infections.  So far no mouth sores…keep praying!

much love from our family,
Amy

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