I just found that we will have to go to Shands for a variety of appointments on June 12 and 13. Tuesday Payton and Parker will both have physicals and lab testing done. We will also have a talk with the anestiologist regarding Payton. Parker will have a CT of his chest and sinus so they will have a base line before they start all the chemo. Wednesday we will meet with the psychologist and social worker, as well as, have an mandatory education class. They also need to do an EKG and echo, but that will be scheduled in Orlando for some time next week.

The kids are still having fun around the house. I was stressing all day because Parker felt so warm – but he was not even close to a fever. I think I’m just paranoid about it. Especially since I’ve had a cold I fear that he might catch it.

Have a blessed night and thank you again for your continued prayers for our entire family.

Well, let me start by saying how absolutely wonderful Parker is with Paige. She was in her car seat and he stood next to her with his hand on her arm. This morning she had milk coming out of her mouth and he said “ewe, yucky”. He took the burp cloth and every so gently wiped her mouth.

Now for the part you’ve been waiting for. This is everything that I wrote down (one handed, feeding Paige) while the transplant doctor spoke with us. I’ll start with Parker’s process and then go to Payton’s.

Parker will be admitted on June 18th and receive medicine to prevent seizures (they are common with the type of chemo he will be receiving). June 19th starts the chemo. He will get 4 days of Bucilfan (sp?) and 4 days of Cytoxin (sp?). These two will be given at such high doses that they will destroy his Bone Marrow forever. His counts will probably hit zero the very next day.

He might get mouth sores. In severe cases they will have to use a morphine drip to control the pain. He also might need a nutrition IV – most patients don’t eat for quite a while after the chemo. We asked about a feeding tube, and because of complications of infections, they don’t like the option (music to my ears).

The 2 weeks following the chemo will be the most critical for Parker. During this time he will be in a separate unit from other patients.

June 28th will be the transplant day. I’ve been told that this is considered a 2nd birthday for Parker.

His blood cells will begin to come up about 2 weeks after the transplant. It will be in the 20thish day for his ANC to go above 500. There is a higher than 95% chance that the bone marrow will take because the transplant is with a matched sibling donor. This doesn’t mean that it won’t stay though.

Graft vs. Host disease. This is where Parker’s immune system will try to attack Payton’s bone marrow. We want a little of the disease because it will show that the bone marrow is attacking the leukemia cells. He will be on medicine to prevent a serious case of it though. Immune suppressive drugs will start a day or two before the transplant takes place. He will have Cyclosporine (sp?) for 6 months and Methotrexade (sp?), which is a form of chemo, for 4 doses post transplant. Symptoms could be a skin rash that looks like a bad blistering sunburn and damage to the liver or intestines. If there are signs of the last 2 they would have to do a biopsy. This disease could be fatal, but there is only 10-15% chance of serious Graft vs. Host disease with his sister as a donor (I can’t believe I just typed “only”).

Parker should be discharged from the hospital ~3 weeks post-transplant. He’ll be in the hospital ~30days which includes his chemo before the transplant (which would be ~July 20th). Normally we would have to stay in Gainesville for ~100 days post-transplant, but with a matched donor the doctor is expected ~60 days afterwards. All of this is assuming that there is no serious Graft vs. Host disease or other issues. We will need to go to Gainesville once a week if he needs active treatment for complications; otherwise we will be able to have our visits at Nemours in Orlando. If there are no problems, then we will go to Gainesville every 3 months (not sure how long this would last though).

Parker will go home on approximately 6 medications; one possibly would be for blood pressure.

Shands does 150 Bone Marrow transplants a year, ~30 are pediatric patients. The rooms are small and dark and have the crazy loud air ventilation (to take away bad air – sorry my brain isn’t thinking of the proper wording). Parker will also have to stay in his room the entire time that he is admitted.

Now onto Payton’s process. Her procedure will be outpatient. They will put her to sleep with anesthetics and she’ll have an IV. They will take ~200-300 cc’s (~8 ounces) of her marrow. Take a deep breath before you read this part…they will do 20-30 punctures on each hip! They say that she might need pain meds and should feel good the next day or two. Adults are usually back to work in 2-3 days. She might need to have a blood transfusion (which the doctor wouldn’t think would be likely) if they remove too much with the marrow. He said that we could do direct donation to have on hand if we wanted (which of course we will). She will also have to go on iron pills for some time after the procedure. If she looses too much blood or is in too much pain they would keep her overnight. He said he couldn’t remember the last time this happened though. The might freeze some of her marrow as a back up if they T-cells (immune fighting) are too high. The main risk for Payton is the anesthesia.

Payton still doesn’t realize what is going on. She just thinks Parker is going to another hospital and she is going to have awesome friends to play with while she’s there. My girlfriend, Brooke, has already introduced her girls to Payton and has a plethora of fun, girly activities planned for them. I would love to have the Child Life Specialist from APH come up and be with Payton during the process. Payton and Parker both have grown so fond of Shalese and I think that she could really be an asset to our family during transplant day.

As far as housing goes….I looked at one that I thought was a largest potential and it turned out to not be furnished. We looked at another one that would fit our family well and is furnished, but it is a little on the pricey side. We are still looking into places but need to lock in something soon.

How to pray tonight…I can’t even begin to say. On our drive to Gainesville yesterday, I asked Aaron if he realized where we were going. Of course he looked at my silly. I said “we are going to meet our son’s transplant doctor”. This is all just still unfathomable. Today Aaron asked what he thought we’d be doing if all this hadn’t happened. I said “driving home from my post-partum check up from Daytona instead of Orlando”. Unbelievable and world-rocking – that’s all I can say. Pray hard. Bluntly put, pray for the life of our baby boy, Parker. Health, safety, well-being, smooth recover for Payton. Understanding for her as to why she is doing this. Words for Aaron and me when we explain what she will be going through. Strength for our family to get through another 3 months away from our home.

I won’t be going into many details tonight, but I will definitely have a lengthy post tomorrow outlining the entire process. I think I have a cold – so I’m going to try to get to bed early tonight.

Our trip to Gainesville was good. Parker will be admitted June 18th (Praise God because Aaron is gone the week before taking kids to camp and returns on the 17th) and will have the actual transplant on June 28th.

We looked at 2 potential housing opportunities. One that we thought was furnished, isn’t. And the other one that seems to be perfect is a little pricey. So continue praying as we make our decisions.

Update on my friend Tiffany: She and baby are doing well tonight. The growth wasn’t as large as they thought from the ultrasound. My memory isn’t great these days, but I think that they had to do surgery on the baby’s tongue. By the way, her name is Miracle (how fitting).

Again, be sure to check tomorrow for more details.