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We are finally at the point of making plans for Zack to come home. The ENT doctors have cleared him to come home and feel that his cheek is healing fine. He will need to come back early next week to have the stitches taken out.

Now we are waiting for his white cell count to come down before they will let him come home. We are making plans for Saturday morning though. The hospital has home care set up to start on Sunday.

Is Zack definitely coming home tomorrow morning? Who knows? But we are moving that way. Nate and I are doing everything we can to get him home and not be here on Monday. We just do not want to start on week 10 in the hospital. Today is day 61 and we are at the end of week 9. Everyone here is really working hard to get him home tomorrow.

We expect him to be home for 3 to 4 weeks to let his cheek completely heal before he comes back in for the next round of chemo. But we really do not know how long it will be. They will be watching his blood closely with active leukemia so depending on what that does and how fast or slow his cheek heals determines when the next phase starts. The first few days at home will be getting him settled in and adjusted to being home. Heather has pointed out that he will feel very tired and weak the first few days and then start to feel his strength return. We also will be getting into the routine of the nurse coming out to the house to take care of his line and drawing blood. They are also having a physical therapist come to the house to help him after being in bed for so long. We took a long walk outside today and now he is hooked back up to the IV poll waiting to get platelets and another bag of red blood cells (had the first bag before our walk).
Please pray that his white cell count will come down and he will be able to come home in the morning. Also pray that God would cause the next phase of chemo to get Zack into remission.

September 26, Monday & Tuesday

I got to the hospital on Monday just in time to see Zack off. They had just come to take him to the OR to take care of his cheek. He was able to get in earlier than they had thought. He left at 11:15 am and did not get back to his room until 5:00 pm. His head was all wrapped up so we could not see his cheek. Later in the evening the ENT doctor who did the surgery came in and filled us in on the procedure. He said it went well and that there was a lot of infection in there. We are glad that this seems to finally be the end of this. He will have stitches taken out on Friday and there is a drain in there also. Once that drain looks clear they will remove it.

The oncology doctor also came in to check on him after he got back from surgery. We had hoped he could come home on Wednesday but sounds like, if we are lucky, he can come home on Friday. They need to manage the pain in his cheek from the surgery, watch and make sure the infection is gone and, as always, wait on lab work before they will send him home. He hasn’t been running any fevers so that is good. Now they need to change all his medication to pills and make sure he is eating before they will let him go (along with watching his cheek). After they had taken Zack off to surgery I got a chance to have a talk with Heather and get a lot of my questions answered. She filled me in on what they will do to start the process of going home. Wednesday a social worker will come in and talk with Zack and I about what home care will be like. They will set us up with a nurse who comes to the house and draws any blood needed for lab work and dressing changes on his catheter. At least we are talking about going home! But we know not to get our hopes up for a specific day to be coming home. Tuesday: Today Zack has been resting most of the day. The pain medication puts him out and he isn’t too alert when he is awake. This morning the ENT doctor changed the dressing on his cheek and thought it looked good. His immune system has been in the 3000+ area the last two days so they are glad he has that to help heal his cheek. He tried backing off some with the pain medication in the late afternoon so he would not be sleeping all day. They have him on a pump that he can just push the button when he needs the medication. Just the usual routine of all the different doctors coming in and the daily medications. His eye is still bothering him so it is hard for him to read or watch TV still. Trying to stay positive right now isn’t very easy. After 58 days in here (today) it is hard to be going home with active leukemia in his system. I need to focus on the now – getting him home and making that time the best for him to be able to get his strength up for the next round of chemo. We also need the time as a family to be able to be all together at home.

A big ‘thank you’ to everyone who ran for the Children’s Hospital with us. You can find photos of that day here.

Sunday, Sept. 25, 6:30pm. I’m (Nate) sitting in Zack’s room at HUP again. The past two days have been very eventful.
I arrive at the hospital at 6:00am on Saturday morning so I can be here when Dr. Luger makes her rounds. She says her short term goal is to get Zack home as soon as possible to get a break from the hospital. (Our expectation had been that he would go home in remission, have about a one month break, and then go back in for a bone marrow transplant) Now he will be coming home with active leukemia. The dilemma he faces is that he needs more chemo to try to get into remission but with his cheek infection, he needs his immune system to fight it off. Dr. Luger needs two pieces of information: What is really going on in his cheek and what are the final results from the recent bone marrow biopsy. She suggests that an MRI test might tell them what they need to know about his cheek.
After she leaves, the room is quiet, and then Zack says “Well Dad, the road just got longer and the odds got lower.” He expresses his disappointment that after nearly two months of treatment he still has active leukemia. Why is God allowing this road to be so long and difficult? We spend time praying about all of this, asking God to keep his promise to be strong in our weakness and asking for healing of the cheek infection. The more we discuss it, the more we agree that getting Zack home quickly needs to be primary.
When two of Zack’s best friends from high school visited him in the evening, Ginner and I went for a walk around Franklin Field, the U of Penn football stadium, and we had a chance to talk things over a bit.
When I consider Zack’s situation, one of my biggest concerns is that our children (or Deb or I, for that matter) don’t become bitter or angry at God but rather trust His plans. As Psalm 139 says, “Your eyes have seen my unformed substance; and in Your book they were all written, the days that were ordained for me, when as yet there was not one of them.”
In the late evening before going to bed, Zack asks me to read I John 1, and then again and one more time. I ask him why he likes that chapter and he says it is the part of the passage that God promises that “If we confess our sins, He is faithful and just and will forgive us our sins and purify us from all unrighteousness.” We pray and God gives us the grace to praise Him for this situation. I head for home.
I arrive at 6:00am again Sunday morning in time for Dr. Luger’s rounds. We agree that she will try to get him home this Tuesday – that would be great! She tells us that they have decided to do an MRI of his cheek today, and maybe a needle biopsy as well. We discuss the bone marrow transplant process a little, which includes aggressive chemo, and possible full body radiation, and potential side effects – the difficulty of what he faces becomes more real . . .
After she leaves we talk about things. Zack just wants this to be over – he wants to be coming out of the bone marrow transplant ready for whatever is next in life. We realize that this is not up to us. We pray together again. Then we both sleep until they come to get Zack for the MRI.
Later in the day, a doctor comes to do the needle biopsy. Our nurse gives Zack some pain medication and the doctor is very gentle in her work. She immediately finds that there are pockets of infection (rather than swollen lymph nodes) and this is good news. They decide to do surgery tomorrow afternoon to clean out the infection. This means that going home on Tuesday probably won’t happen so we begin thinking of Wednesday as the goal. We feel relieved to finally know why his cheek is swollen and are happy that there is a plan to address it.

September 22 & 23, Thursday & Friday