It's been a good couple of weeks for the Millers. We completed Daniel's last "planned" hospital admission and thereby, the last portion of the "Interim Maintenance" phase of chemotherapy near the end of June. We had about a week and a half of "vacation" before the start of the next phase (called "Delayed Intensification") and so we quickly put together Daniel's 10-1/2 year birthday party. A few years ago, we moved his party to the summer time so he could do more with his friends, take advantage of warm weather, and not be lost in the midst of the December holidays.
This year, it was a bit harder to get planned and executed, but other than the short notice to friends and family, it went off very well. We even had great weather and temps below 90 at the very end of the heat wave. God is good. Daniel came home with more LEGOs and having had lots of fun with his friends and cousins as Southeastway Park. Many thanks to all who attended - in person or in spirit.
Tuesday, we were to start the Delayed Intensification phase - the last intensive phase before going into "Maintenance" which will last about 3 years. Unfortunately, his white blood cell count was too low and we were sent home to wait another week. In truth, none of us were too upset. The good news is that, although it will push out the end of this phase, it won't push out the final completion date. But at this point, that's so far down the road, it's hardly even worth thinking about. We'll be glad to get through this last intensive phase that none of us have been looking forward to.
Tuesday, we were to start the Delayed Intensification phase - the last intensive phase before going into "Maintenance" which will last about 3 years. Unfortunately, his white blood cell count was too low and we were sent home to wait another week. In truth, none of us were too upset. The good news is that, although it will push out the end of this phase, it won't push out the final completion date. But at this point, that's so far down the road, it's hardly even worth thinking about. We'll be glad to get through this last intensive phase that none of us have been looking forward to.
In general, Daniel's energy and appetite have been slowly recovering and having the extra week off is probably a good thing. I've been pushing him to get more sunshine (which ironically has been more difficult with the searing heat wave we just came through), fresh air and exercise. We're getting there gradually, but the months of inactivity have led to some bad habits of video games, TV, and lounging around indoors that are proving hard to break. Andrea has gotten him out for some play-days and a swim day recently though that's been good for him ... mostly.
The mysterious white cell count continues to bounce around all over the place though, and is often frustratingly low. It's an indicator of his immune system (but not his actual health). The Riley staff tell us that it could be almost anything that causes it to remain low, but is likely due to minor bacterial or viral infections. I believe this must be due to exposure to various bugs "going around" either through Andrea & I having been exposed and bringing them home, or directly from interactions with his friends. Andrea and I can't do much about our own exposures, so it's really difficult to try to find a balance between wanting to let him play with his friends and my instinct to want to keep him in a "bubble". I believe very strongly that the psychological side of our health is every bit as important as the physical side. If he stays lonely and depressed, I feel he's likely to remain more "sickly" than being able to laugh and run and play even if it means exposure to more infectious agents. It's difficult to find the balance and the disagreements between Andrea and I have at times been rather unpleasant. We're working through it and trying to find the best ways to communicate and find agreement in the day-to-day decisions and activities.
Unfortunately, Andrea's health has been quite a roller-coaster ride recently as well. She's been knocked completely out of commission several times lately and has a lot of trouble just finding the energy (much less enthusiasm) to even get out of bed in the morning. Her courage, character, (and Facebook) keep her going though. :-) It does make it more challenging for me to try to keep up with work as well as the household chores. Cleaning in particular is something I need to do a lot better at keeping up with for both Daniel's and Andrea's sakes. Seeing his persistently low blood count numbers and her constant battles with various bugs really drive this home.
When Daniel and I showed up at Clinic on Tuesday, we were happily surprised to have Joey and Elizabeth Keller join us in the waiting room. Daniel & Joey got to spend a few brief minutes linking their Nintendo DSes together to play Super Mario Cart (or something like that) while Eliz and I talked about our respective challenges. Unfortunately, theirs currently dwarf anything I can even imagine much less relate to.
We were able to attend Joey's 9th birthday party this past Saturday and here is a link to some pics from the party on Facebook: https://www.facebook.com/media/set/?set=a.3604906886693.2126038.1394270143&type=3
We feel very close to the Kellers and, though only in a very small way, can relate to some of what they're going through. They're amazing people and we love them to pieces. So I was in tears this morning reading Nick's latest post about what Joey is going through.
http://www.caringbridge.org/visit/joeykeller/
Please, please pray for Joey, Nick, and Elizabeth as they stare this dragon in the face and march forward in faith with sword in hand. Scripture assures us that God's desire is ALWAYS for us to be whole, healthy, and free from sickness and death. I am absolutely confident in this. This is NOT what we were designed for, and God grieves alongside us through all our trials and tribulations. We don't always understand what sometimes prevents God from healing us, but we do know that PRAYER changes things. We also know that ALL things work together for good for the Called.
Please join with us - frequently - as often as you can - in persistently PESTERING God about healing Joey and delivering him from this awful cancer (Luke 11:8; 18:5). Yes, this is actually what He wants us to do! (Read the two passages if you haven't made this amazing discovery.) Pray for Joey to be completely healed. Pray every time you think of it, and think of it often. Pray specifically that every cancer cell and every form of cancer cell in his body would be destroyed, and that all damage would be healed restoring him to complete health. Also pray for the protection, peace, endurance, patience, and faith of all three of them. This is a long and difficult race for them, strewn with pitfalls and robbers along the way. They are amazing people, and Joey is an absolutely amazing, faith-filled, brilliant and insightful little boy. I have been learning from all three of them regularly as we watch them fight this battle. We seek to help them "hold their arms up", in any way we can and hope you can join "TEAM JOEY" alongside us as well.
When Daniel and I showed up at Clinic on Tuesday, we were happily surprised to have Joey and Elizabeth Keller join us in the waiting room. Daniel & Joey got to spend a few brief minutes linking their Nintendo DSes together to play Super Mario Cart (or something like that) while Eliz and I talked about our respective challenges. Unfortunately, theirs currently dwarf anything I can even imagine much less relate to.
We were able to attend Joey's 9th birthday party this past Saturday and here is a link to some pics from the party on Facebook: https://www.facebook.com/media/set/?set=a.3604906886693.2126038.1394270143&type=3
We feel very close to the Kellers and, though only in a very small way, can relate to some of what they're going through. They're amazing people and we love them to pieces. So I was in tears this morning reading Nick's latest post about what Joey is going through.
http://www.caringbridge.org/visit/joeykeller/
Please, please pray for Joey, Nick, and Elizabeth as they stare this dragon in the face and march forward in faith with sword in hand. Scripture assures us that God's desire is ALWAYS for us to be whole, healthy, and free from sickness and death. I am absolutely confident in this. This is NOT what we were designed for, and God grieves alongside us through all our trials and tribulations. We don't always understand what sometimes prevents God from healing us, but we do know that PRAYER changes things. We also know that ALL things work together for good for the Called.
Please join with us - frequently - as often as you can - in persistently PESTERING God about healing Joey and delivering him from this awful cancer (Luke 11:8; 18:5). Yes, this is actually what He wants us to do! (Read the two passages if you haven't made this amazing discovery.) Pray for Joey to be completely healed. Pray every time you think of it, and think of it often. Pray specifically that every cancer cell and every form of cancer cell in his body would be destroyed, and that all damage would be healed restoring him to complete health. Also pray for the protection, peace, endurance, patience, and faith of all three of them. This is a long and difficult race for them, strewn with pitfalls and robbers along the way. They are amazing people, and Joey is an absolutely amazing, faith-filled, brilliant and insightful little boy. I have been learning from all three of them regularly as we watch them fight this battle. We seek to help them "hold their arms up", in any way we can and hope you can join "TEAM JOEY" alongside us as well.
Grace and peace,
- Tim -
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