An email from Amy
28. Nov, 2009 
1 Comment
I wanted to share this as it’s a bit of insight into what Phil and Amy are going through, and how they are coping, with the reality of having a child with leukemia.
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To our amazing friends and family=)
You have all blessed us in so many ways with your unselfish outpouring of care and prayers for Jordan and our family. We are humbled, thankful, and reminded once again of how God holds us up and supports us with the community around us. This may be a long email as it takes me a long time to get to my point…but you all love me already for this=) Just want to share this journey so far with you….
Phil and I had been worried about Jordan for 2 weeks before his diagnosis and I had noticed his color change, fatigue, and bruising. I talked to the MD 3 times in the weeks we were worried about him about his color change (anemic) and no labs were drawn until Nov 9th and they did not review the labs until we came for our 3:20 appt and were then sent straight to Hunnington ER. That month was crazy as my parents were gone and I was up with Jordan most of the 2 weeks as he was not breathing well (grunting at night). During the day he needed more attention but I had to spend most of my time jumping up for Jeremiah and Cedar’s frequent potty runs. I mention this because with our journey with bringing quads into the world, it was hard for me to let go of things that “I could have done” to advocate better for our kids, etc. This journey with Jordan for the past 2 weeks has been about applying what God taught us in becoming parents of quads. I will tie this in later=)
At Hunninton Er I knew something was really wrong with how the nurses and doctors treated us…they were way too nice and it reminded me of how we were treated when we got the news of having quads. All I knew is I just did not want it to be cancer. But as we waited for the blood tests, I just kept saying in my head “God is good all the time, God is good.” The news came and it almost was not a shock because we could tell there was something really wrong. It felt like it was a repeat of leaving my perinatologist appointment and heading straight to hospital bedrest…Jordan and I were transported by ambulance to children’s hospital and all the poking and proding continued, blood transfusions started, and no chance to put an exhausted little man to sleep. It is a crazy that you can drive your child to the MD office for a check-up after hearing he had bronchitis and end up in an ambulance to CHLA.
I am thankful for people I have learned from along the way like Sara, who gave us rest at night when the kids were babies, and shared with me her continual journey of diabetes and battling with the loss of some of her vision in her 20’s….she came to the peace that God is good all the time. I am thankful for the Hooten’s who shared their journey of making their daughter Eva’s life as normal as possible after she was diagnosed with luekemia (ALL…same as Jordan). I kept thinking of Katie’s words when they said leukemia in the Er…”the number one predictor of how well a child handles their illness is how their mom responds to it.” I am thankful for all God does to prepare us for our devastating moments in life.
I am thankful that I am not gripped with all the fear I dealt with in carrying quads after being bombarded with all the stats against our pregnancy from most of the medical community. Our kids lives are a testimony to answered prayers and God purpose for their lives. I am thankful that my mind has not gone as a normal hospice social worker mind goes when you hear cancer…death. I know Jordan will make it through this battle, I am just crushed that he has to suffer more after already having to suffer in the NICU for 2 months. That is the hard part, his hands already have scars from all the IV’s from the NICU…it breaks my heart that his body will have so many more scars. But then when I look at it all in perspective, I still am amazed that we have such “healthy, smart, happy” kids who all started out life under 3lbs.
I never understood why we ended up with quads…we never did IVF, PCOS is not that uncommon as a reason for infertility. I think I know now why…one of the biggest comforts during this process is knowing that Jordan will have his siblings to play with, help distract him from his symptoms, help him keep up with his milestones, and help his life stay normal and routine. We had already started to live in “hibernation” before his diagnosis as we did not want to deal with the swine flu times four and knew our kids were in the category of high risk due to their chronic lung disease for the H1N1 virus. Also, Phil is working 3 jobs and with my parents gone for a month, we knew we needed to keep the kids well. 2 days after my parents got back, Jordan was diagnosed with Leukemia…God knew we could not have handled all the changes that came with the diagnosis without them being in town=) All that time in trying to avoid the kids getting sick…it is crazy that Jordan ends up cancer. I don’t know how to interpret that yet.
Recently we gave our life stories in our home group and it was my first chance to review the last 2 years. God brought a lot of closure during this experience as I shared the experience of infertility and having HOPE for having kids. HOPE for our four kiddos to be born being able to breathe moved to GOD WITH US as we experienced the miracle of having 31 week quads being born and breathing. Also, amazement that my body made it through 3 months of bedrest. Recently I finally moved onto GRACE and cluing in that I needed God’s grace in order to let go of a lot of hard parts of raising quads and dealing with the medical system, etc. All this to say…I am thankful for the past lessons of needing to apply God’s grace: the alternative is a life of isolation and bitterness. I needed these lessons to apply God’s grace to myself and the MD for not doing something sooner when Jordan showed signs of enema, etc.
I am also thankful that Phil and I survived raising four preemies and pray that I have learned from my past mistake of being a critic, instead of a support to Phil. He is doing the scheduling now because he knows I suck at telling people what I need (outside of my parents and him=). He also knows that my core is wanting to do it all myself…I think I am a 2 year old at heart=) I am touched by Phil’s brokenness for the pain Jordan is experiencing. We have switched roles a bit…but I have probably gone into the role of crisis intervention and know what role I need to play to keep the kids calm, etc.
One of the blessings of being a mom is what voice, touch, presence can bring to comfort your child. I am thankful that Jordan finds comfort on me and I think it makes it easier for me as I can hold him and offer comfort. My tears come when I can’t help him feel comfortable or distracted…usually that is in the middle of the night. For those of you following from the beginning, there have been a lot of mentions of poop. That is because he has been soooo uncomfortable and that is when I get frustrated. I am thankful for a nurse Laura who came in and saw one of the episodes of Jordan screaming in pain and finally validated my concern and his extreme discomfort that he had been experiencing for more 2.5 weeks. All the MD’s kept telling me to stop focusing on the poop…but that is what he was screaming about at night. I am thankful that is behind us…although now we are on the other end with diarrhea=)
This email is turning out to more of journal for me…so thanks for listening=) I am thankful for the sweet and innocent prayers of Jonah, Jeremiah, and Cedar for Jordan to “feel better and come home.” Their belief and sweet voices make me cry. Cedar is such a care giver and gave Jordan a huge right when he came home. Jeremiah encourages Jordan to gain his strength back and brings his ball to throw to Jordan. Jordan holds onto the furniture as he walks and hobbles like an old man, but does not complain and plays with Jeremiah. Jonah dances and jumps when Jordan came home… He goes to bed with his roomie Jordan and says “shhhhh Jordan sleeping.”
Jordan is my kiddo that I have said does not need a mommy as he is so independent and unemotional. He walks around with confidence and is all boy. I am thankful he soaks everything in and is so smart and exploring. He is my boy who would not cry at blood draws if I explained what was going to happen and was curious to see his blood. I think his personality will make this journey much easier on him (and selfishly us too). He is a fighter like his Daddy and does not give up. He is definitely the leader of our tribe, not because he wants to but because of his confidence and exploration. He also tells you directly what he wants. Like this morning after being up since 4:30am, he tells me at 7am “I am hungry. I want caterpillar noddles. I don’t want juice.” He still has shy grin and dimples…just more irritable and angry. What precious kiddos we have=)
So thank you for all your texts, emails, calls, and offers for help. We are in the midst of figuring out what the next 3.5 years of treatment will look like. But are thankful to not feel alone on this road. I don’t know if I should say this, but helping Jordan fight ALL seems much easier than figuring out how to keep 4 preemies alive. We did not have time to connect with multiple parents in the beginning of learning to parents of multiples/preemies. We are thankful for the Hooten’s and how they model continuing to live life and allowing your kids to enjoy their childhood while fighting ALL (acute lymphoblastic leukemia). It is such a comfort to have Eva’s sweet face in our minds when we think of ALL…knowing the amazing girl she is and all she has made it through successfully. Pray for Eva and her family as you pray for Jordan=) Two very brave kiddos who have bright futures ahead of them!
much love,
amy
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