Overwhelmed

Last night was very hard for me… I seen Cody covered in those red splotchy patches again and I just couldn’t sleep and sat there and watched him, even though there was nothing that I could do about it… I just rubbed those spots and cuddled up so close to him, wanting to hang on to that moment for as long as possible… for reasons now known more to me today.
I didn’t wait and give the nurse a chance to call… I called her early this morning to tell her all of Cody’s symptoms and express my concern again. I went to hop in the shower and while I did, she called back. They got Cody’s results in. Positive. You know it’s one of those things that even when you suspect something and just almost know it… hearing it, having proof, makes it all totally real. The nurse said for Cody to come in ASAP- they needed to check his blood again and he needed to see his oncologist. We didn’t have anyone to take care of the kids, so we gathered them up and off we went.
Cody is such a special person. He’s a people person, big time!, and has the best personality. I think he could get along with anyone and strike up a conversation like he’s known you for years. Before we even got there, the news of our situation had spread like wildfire. Everyone in the clinic already knew before we could say anything…. (With great sadness on all of their faces)
We knew we were looking at chemo and ATRA pills, assuming this was something we could do back and forth-between home and the clinic. On the way there, Cody said, well, maybe we can grab a bite to eat while we’re already over here and then we can head back home after my appt. I just smiled, not knowing what this appt might hold… About half way there, I started crying and I just could not stop, but I was trying to… I didn’t totally lose it, but it took everything in me not to. I just kept grabbing Kleenexes and drying my tears as soon as they fell…. I pulled myself together when we pulled in the parking lot and I looked in the mirror and my eyes were so red and puffy… I looked awful!
We went inside and as last time, the waiting room was packed. I knew it by the parking lot and it just saddened me so much, because so many families are going through this! Everyone there smiled and laughed at Zane and Kadee. They were entertaining. Cody had his lab drawn and came back to wait with us and in no time, they called him back. The nurse went to check Cody’s blood pressure and I think it took her 3 times because it was so high. I think she said it was 150/100… She asked if it normally was like that? No. She commented how stress, etc can be a factor to which I said, yes, I’m sure that’s what is going on and he said, yeah, I didn’t get the best news today… to which she said… I know, I heard…
Maybe it was harder because Zane and Kadee were there with us, as we had to stare at their little faces…. The oncologist told us that the leukemia was back and that they needed to get started on chemo and ATRA pills and Cody would be admitted to the hospital and monitored…. Cody’s lab results today were much worse than last time. 6 lows and 1 high. Actually what the oncologist said early on was, you were right! Even though Cody looked good and his lab was ok, you were right. I told him, I just knew it. He told us the good news was he didn’t have to do another bone marrow biopsy right now. He left to find the nurse as they were trying to figure out a definite plan and while the room was just us 4, there was so much silence… and I didn’t know what to do, so I just reached out and hugged Cody, to which he started to cry and when the nurse came back in, I was fighting it back so hard because Cody was losing it…and she didn’t know what to do or say and she reached out and touched Cody’s knee… and she said, you really don’t want to go back over to the hospital, do you? To which he said, no, I don’t. I almost died over there. Then the tears started pouring out of my eyes and I covered my face and grabbed a Kleenex and she said, this is bringing back a lot of memories, isn’t it? And, I just barely got out the word, yes. She said, but it won’t be as bad as last time, right. But, I could tell if that was more of a question to us or a statement… But, I heard uncertainty in her voice for sure. I told her we did not go there today, expecting to hear that at all. She told us to go and get some lunch, get our thoughts together and then come back.
Cody and I continued crying, but trying to control it. Who even feels like eating at a time like that? It took us about 30 minutes or so to even decide where to go, what to do and we tried to go on and eat, the best we could. We headed back and went in for a meeting with a social worker who is trying to help us, because since Cody was declared disabled, he has no medical coverage yet again. Cody was falling apart during that meeting and was going to go out to the vehicle with Zane, but we were supposed to meet the nurse again after our meeting, so I told him we needed to go find her, but he was saying that he just couldn’t deal with all of this right then. I convinced him that we go find her and we did and we just stood there in the hallway and discussed things… I said, since Cody is obviously not nearly as bad as he was last time, isn’t he stable enough that we can go home for today and deal with this tomorrow? I said, we’re overwhelmed, we weren’t expecting all of this and Cody just can’t do this right now. She agreed that he was stable enough and that she actually thought that would be a good idea to just go home and try to relax…as Cody said, Relax?!... But, we knew what she meant. She looked at Zane and said, are you going to go home and take care of Daddy? And I told her that earlier I had told Zane, go give Daddy a hug, Daddy doesn’t feel very good right now… And, Zane heard me telling her the story and he walked over right in front of Cody and grabbed a hold of both of his legs and squeezed him… To which Cody lost it all over again and the nurse I think almost did, too. She asked if Cody needed something for his pain, but we do still have pain pills at home, so he was ok… Then, she asked if he needed some Ativan and I told her, we might need to get started on the Xanax again. (Just the mentioning of these meds, brings back sooo much!) So, we agreed on a plan….
They will have their regular meeting in the morning at Highland’s as they normally do and then the nurse will call us and get everything set up at the hospital and tell us what to do. Cody will be going to the hospital tomorrow and get a PICC line and then will start the ATRA pills and chemo again. Like the oncologist said, it’s like we’re starting all over. We have to do what we did before. The plan right now is chemo for 3 days straight, I think. They hope to not have Cody there for over a week and then we can just go back and forth, but with his history, he has to be in the hospital. The nurse had even checked again with the oncologist to see if there was any way we could avoid the hospital and there was no way… There are too many risks… too many side effects…
(Last time the following happened to Cody- Source: www.ispub.com)
Retinoic acid syndrome is reported to occur in up to 25% of patients treated with ATRA. The syndrome is characterized by development of fever, pulmonary infiltrates and effusions, pericardial effusions, hypotension, dyspnea, and renal dysfunction. The morbidity and mortality of retinoic acid syndrome is significant, with mortality rates as high as 9% reported; however, the majority of patients will make a rapid recovery if the syndrome is recognized early and ATRA therapy is discontinued.
There are no promises, no guarantees. We don’t know what all will happen once tomorrow begins…Once treatments begin…We have a plan for the now and the hopes for not being there long… We are going to enjoy, as much as we can, the here and now that we do have… The night before the journey begins yet again…
Thank you isn’t nearly enough for what all you all have done for us and continue to do for us. Prayer means everything to us right now… God is in control.
To all of the sites I normally visit through www.colesfoundation.com and others that I have signed up for updates to… Know that I am still thinking and praying for you all! There isn’t a day goes by that I don’t. We don’t have computer access at the hospital where Cody will be… so it may be a while before I can post again… As a friend told me, God is not limited to what He can do… He gave us a miracle before… He can do it again, if it be His will. We are praying for God to give us strength for the days ahead…. For God to carry us through… We pray for God to be with all who will be caring for Cody and all who enter his room…Cody did ask if he would be going back to CCU and the nurse said they will do everything they can, so that he doesn’t have to…We continue praying for all of the many families out there going through this cancer journey and for all of the families who have lost, yet heaven gained, their loved ones to this much despised word and we pray for God to wrap us all up in His love and hold us close...
For those of you who wanted our address to send us something:
The Pickering Family
1117 E Jewell St
Siloam Springs, AR 72761
Believe in the power of prayer!
“O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago.” Isaiah 25:1 NIV
Big Daddy Weave- Every Time I Breathe
I am sure all of heaven's heard me cry
As I tell You all the reasons why
This life is just too hard
But day by day
Without fail
I'm finding everything I need
And everything that You are
To me
Chorus: Every time I breathe
You seem a little bit closer
I never want to leave
I want to stay in Your warm embrace
Oh basking in the glory shining from Your face
And every time I get another glimpse of Your heart
I realize it's true
That You are so marvelous God
And I am so in love with You
Now how could I after knowing One so great
Respond to You in any way
That's less than all I have to give
But by Your grace I want to love You not with what I say
But everyday In a way that my life is lived
Chorus: Every time I breathe
You seem a little bit closer
I never want to leave
I want to stay in Your warm embrace
Oh basking in the glory shining from Your face
And every time I get another glimpse of Your heart
I realize it's true
That You are so marvelous God
And I am so in love with You
Wrapped in Your mercy
I want to live and never leave
I am held by how humble
Yet overwhelmed by Your majesty
Captured by grace and now I'm finding I am free
You are marvelous God
And knowing You is everything