Sorry I didn’t update this am like I promised. Our day started with a discussion with Dr. Wall and after that I just wanted to spend time with Parker. I’m sure you all understand.
So yesterday’s report…
Parker didn’t have any blood products. Maybe this was because his labs were drawn at midnight – instead of the normal 5am – not sure why this was done.
Jennifer was our nurse today and did an awesome job of “protecting” me from some phone calls I shouldn’t have been receiving. If really meant a lot that she did this on her own and really stood up for me. This is the way that the nurses are…they aren’t just here to give meds and chemo – they are here to support our entire family. We love them for that.

Aaron and I were both enlightened by speaking with another doctor from another practice.
He mentioned that if Parker has any lingering leukemia or infections that the transplant will definitely fail and will fail horribly. Parker’s lymph nodes are getting more swollen by the day and no one is sure why. Yes, it could be neutrophils attacking…but what are they attacking? He suggested us doing a gallium scan (will describe later) and then depending on the results we could get a biopsy of a node.
He also brought to our attention not only the physical implications of transplant failure (pretty gruesome) but also the emotional part. For example – things get really bad, Parker would be on machines and we couldn’t hold or touch him. Is that how we want to spend our last memories with Parker?
We aren’t by any means giving up…but we now have a new perspective. And a new vision on why we are being turned down. These facts were brought to our attention before – we were just told that transplant was the only way Parker will survive, it was risky though, and that no one would take us.

The other day our friend Kristen (who is in remission!) came up for her birthday party. Here is an excerpt from her blog: “I also visited with Parker. And for the very first time he asked to hold my hand. I do not know why except I think I do. I think that he trust the children more than the adults because we have cancer like him and the adults do not.”
Kristen that was a special and rare moment that the two of you shared. I think Parker senses your spirit and that you two share something in common (more than just no hair ?)

Lately when Parker has to take his oral meds, he will hold all the syringe (3 or 4 at a time) and then hand them to you in the order he wants them. Just one of the many cute things he does. He is still has polite as ever. We were told after his biopsy Friday – immediately after the needle was pulled out – he said “thank you, thank you”.

Night nurse Penny came in for her shift and when she walked in the room and Parker says in the sweetest, most drawn out voice “Peeennnyy”. She smiled so big. Then he clapped and gave her a thumbs up. She said that made her day.

Today’s update:

Parker woke up with a bloody nose/mouth (he has been a huge picker lately). BUT could this have something to do with his labs not being drawn when they usually are?
Parker had a platelet transfusion and then a blood transfusion (he did have a direct donor – but there was no name on the tag).
He has thrown up a few times today and has been a little shaky.

He also had his 3rd granulocyte transfusion (WBC) today. It went very well – the best yet. Slept through the last half and had NO reactions! Praise God!

Payton went trick or treating downstairs with Jaiden and (Child Life) Shalese. I must say I was a little disappointed because Aaron and I wanted to take ALL the kids downstairs – and when we came out of our meeting with Dr. Wall Payton had already gone down there – no Parker). Oh well. She shared candy and toys with Parker. They both still are so loving with each other. She sang him a Halloween song (that she made up) and rubbed his face (he actually let her). It is so precious seeing how they have been interacting with each other lately. Parker even let Paige ride in his wagon with her.
Payton told a respiratory therapist that grown ups can’t go trick or treating and the lady became sad. The next time she (RT) came up Payton pulled her aside and whispered that she had a surprise for her and gave her 2 pieces of candy.

Aaron and I Spoke with Dr. Wall. After speaking with her and receiving an email back from Dr. Staba were are now realizing that part of the hesitation with transplant is because Parker has been aplastic (has had no bone marrow) for about 76 days. We were not aware that this was a reason for not taking him. So, with this conversation and the one yesterday with the other doctor our vision is not as narrow. Dr. Wall has agreed with us that it is so hard to face how sick he is because he is so interactive.

A gallium scan is a test that uses radioactive material to look for infection in the body. He got radioactive injection today. NPO after midnight – sedated – scan tomorrow and again on Friday. results Friday afternoonish. This is a totally non invasive way to possibly see why the nodes are growing again. If it lights up very brightly then Parker still has disease. If it lights up a little then it is questionable as to whether it is disease or infection. We are pretty set knowing what we’ll do if it is definitely leukemia, but not sure if it is the later.

We had a conversation with Dr. Naga yesterday. I just expressed how we have not felt that we are being heard on our decision for transplant and that we are not fairly being represented when the calls are made. He hadn’t done anything at this point because Dr. Gordon was. I asked if he would start making calls on our behalf. That evening I had an email on the centers he would be contacting and by today he had called all 9. Here are the responses:
Notations mean the following:
No— will not consider transplant at this stage
LM— I have left messages for consult/call back
UC—- Under consideration by the team- will know their response later

Institution Response

1. Fred Hutchinson Cancer Research Center No
2. University of Minnesota LM
3. Cincinnati Children’s hospital No
4. University of Chicago UC
5. Children’s Memorial Hospital UC
6. Boston Children’s Hospital LM
7. Cook Children’s Hospital LM
8. Riley Children’s, Indianapolis and UC
9. University of Pittsburgh No
We are extremely pleased with the QUICK effort he has put into this for us.
Thank you to all of you who have suggested St. Judes. Unfortunately as great as they sound St. Judes is not an option because treatment has already been started here. We tried to go to them when we first found out insurance didn’t cover Jacksonville.

Speaking of insurance – ours is maxed out. I got the awesome GOLD card in the mail and no it was not a gold MasterCard, but a gold Medicaid card. Super duper humbling. Especially when I had to walk down and give it to the insurance people downstairs. Not sure how it really works. I do know that I got a letter with it that said eligibility was only for the month of August – so I need to call on that.

I have never really showed emotion for the other kids that we have met while we have been on Parker’s adventure. Of course I have been impacted, touched, saddened, etc. Tonight as I read Christina’s update that her BMA showed 10% leukemia, that she’ll have to endure another round of chemo and her transplant is delayed – I cried. Then I read Marlie’s update. She is in special care with a very serious infection. These girls have become a part of our family. I can feel the heart ache and hurt that their mom’s are feeling. I know all to well the disappointment and the scared feelings. Please, please pray for them – the children and their families.

“I have heard your prayer and seen your tears; I will heal you” 2 Kings 20:5
Lord knows that we have been praying and crying. We know that God is going to heal our children. What we do not know is whether or not that healing will take place here on earth or up in heaven. Will it happen this week or next year? We just need to trust in God…period…trust in God!

**WINK news did a follow up story click here to see it

Daddy’s update

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These past few days have been extremely hard for us and although we would trade everything for Parkers health we really can’t imagine going through this without all of you. In the early days of diagnosis we were bombarded with words of encouragement, gifts for Parker, cards and food. We wondered how long it would last and most importantly we didn’t want people to forget and stop praying for Parker. Right now I would like to humbly thank everyone who has walked along side us during this difficult time. For not giving up or forgetting about Parker. For continually sending us cards, leaving comments on this site, sending toys for Parker, for including our girls and sending them gifts also and not only continuing to pray but telling your friends and family about this site and recruiting more people to pray. You have not forgotten about Parker and there are more people praying today than in the first month. This past week we have been so well taken care of and shown love. Thank you for the lunches and cups of coffee from Starbucks that have given us ENERGY! Thank you for the generous financial support that has been sent and given us breathing room. Thank you for the awesome organization that I work for that has given me permission to take as much time as I need without me asking. Jamie has gone over the top with writing thank you cards (over 300) but if you haven’t received one (and I know you probably don’t even want one) please accept our continued gratitude and know that we truly do appreciate everything. We have watched the body of Christ across denominations come together to pray and support a family that most of you don’t know personally. Only through Christ is this possible.

As you can imagine Jamie and I have been wondering if we have enough faith, wondering how to pray and searching for God’s will. Today we prayed for just those specific things. We were looking back at this entire journey and wondering if we had ever given it completely to Him. Neither of us could honestly say yes. For me it must be that I was only interested in God’s will if it went my way. I can recall many times making decisions that I thought best for Parker without putting it before God. I keep thinking that God needs help or something. He doesn’t need for us to do anything but get out of the way, love and trust Him. Pray that Jamie and I can do that. Pray that we can put God before Parker and ourselves. What a journey this has become……and it’s not over yet.

I’m tired and will update in the am
Still no news on transplant – will fill in more tomorrow

How many of my posts have started with…”wow – what a day” or better yet “what a frustrating day”? Well, here is another one. I’ll start with the good.

Parker’s granulocyte transfusion went very well. He slept through most of it. The donor did not take nupegeon, only the decadron and Parker was pre-medicated a little more than last time. The last 20 minutes or so the agitation started. Screaming and crying – not knowing what he wanted. Also seemed to have leg pains – which morphine helped for awhile. We’ll see how high his counts are boosted tomorrow.

Parker also had a blood transfusion today (Thanks Vernon Peterson!!!)

Frustrating.
I will try to summarize..which is hard for me to do.
Kit did not arrive. Transplant coordinator has never heard of us. Monica (nemours nurse) in a meeting and didn’t return my call. Frustration building – told not to worry. Spoke with Dianna (nurse manager) who contacted coordinator and Monica and found out that Dr. Gordon was going to come over and talk to us. Which he did…

Dr. P was willing to take us, but the rest of her team was not. He called Jacksonville they said that they “might” but we need to get another biopsy to be sure that he doesn’t have any cancer in the nodes. So far the 3 (including Dr. Staba at Shands) are unwilling because of the risk. Aaron and I sat there and explained that we KNOW the risk. If we sit here and do nothing Parker will die. Do they realize that??? Is that being expressed when the phone calls are made? Again we were told that there is the fear that the transplant wouldn’t take and Parker would die from infections or complications. WE UNDERSTAND…BUT DO THEY REALIZE THAT HE WILL DIE HERE BECAUSE WE ARE DOING NOTHING???? We made our intentions clear last week – why is this so confusing? Dr. Gordon said he would call Univ of Miami- but there is not on oncologist transplant surgeon – so that won’t work and that he would call Duke. I asked if he was stopping at 5? From MY understanding “yes”. Doesn’t it mean something if he gets 5 no’s? Our response – keep trying. We put it on the table that we are ready to find another group of doctors if they aren’t willing to fight for us. It would be one thing if we were told that he had 0% chance with a transplant – but he doesn’t. I am super frustrated – but now am super motivated. I gave him until noon tomorrow to get back with us (sensible Aaron reminded me it may take time for Duke’s Dr to look over the chart and respond). I am also going to get in contact with Dr. Staba and Dr. P and make sure that they realize we know the risks (just in case that wasn’t portrayed).

“And the prayer that is said with faith will make the sick person well. The Lord will heal him.” James 5:15

Payton looked at Parker today and said “your the best brother in the world. Your better than any of the other brothers.”….
We have to fight. For Parker, for Payton, for all of us.

Pray for us. Pray for a surgeon to take Parker – quickly. Pray for Parker to remain in remission. Pray for his fungal infection to be gone. Pray for us to have the support from our physicians.

**Parker was on the news in Ft. Myers tonight. You can see the story (thanks Amanda and family!) HERE