Today has been a better day than yesterday...and positive is positive! It really is amazing how one's priorities change with big life events. He has had a good bit of pain today. However, I went upstairs earlier and Nick was playing a game on one of his hand-held gaming devices. (How lame do I sound? I don't even know what the device is called.) I was so happy to see that! He hasn't even played on his computer in several weeks. Wow...talk about a change in perspective...before this adventure I would have seen him playing and wished that he were doing something else. Now I'm just glad that he is enjoying something.
We really need the prayer warriors to be on alert over the next couple of days. This Thursday we go back to Vanderbilt for a bone marrow biopsy. This one really, really needs to be free of leukemia on the flow cytometry testing. If cells are still found after Thursday the next step may be bone marrow transplant. We know in our knowers that the final outcome of this all will be O.K., but we are believing that we won't have to go through this potential next step. Regardless of the report at the end of the week, we know that God is in charge! It is well.
Tuesday, August 2, 2011
Sunday, July 31, 2011
How Many Knots Are In Your Rope?
"This is the day that the Lord has made. Let us rejoice and be glad in it." Choices...choices...the only REAL choice is to just go ahead and be glad about your situation for the day. Oh, I know, it may not be what you would choose, but go ahead a make the choice to be glad about it. You'll be glad that you did.
A couple of days ago I was talking with a friend about a myriad of subjects. We were just catching up. The subject came around to our first experiences with the Holy Spirit, and I heard myself say that I had been crying out to God because I had been at the end of my rope. After we said our goodbyes I was reflecting on the conversation and remembered having seen an episode of Laverne and Shirley where they had to climb a rope in a gymnasium. A large diameter, straight rope was hanging from the gym ceiling and the students had to climb the rope and ring the bell at the top. That seemed like an impossible task to me.
The thought crossed my mind that my rope now is much longer than it was all of those years ago. It's not nearly so easy to get to the end of it... or even see the end of it. Not only that, but each of the tests and trials in life have placed a large knot in the rope upon which I can stand. God has marked my life so far with these rope knots so that even when my faith is weak or wavers, and I slip a bit lower on the rope, there are still other knots to stand on. The knots above also make it easier to climb back up...even when my strength wanes.
Regardless of how long you have been walking with the Lord, I challenge you to think about the times in your life where He has demonstrated His faithfulness. Each of these times when it was difficult, or so hard that you thought you were not going to make it, He was working behind the scenes and left a knot in your rope that you can stand on today.
In action movies when someone climbs a rope or crosses a rope bridge, someone always yells, "Don't look down!!"...just as the person being rescued looks down and becomes paralyzed by fear. Well, you are and I are the ones being rescued, but today the challenge is to take a long hard look down the rope of your life. Remember God's faithfulness and picture the vast volume of knots in your rope.
I am thankful today that God uses silly memories to re-assure me of His faithfulness! How many knots are in your rope? It is well.
A couple of days ago I was talking with a friend about a myriad of subjects. We were just catching up. The subject came around to our first experiences with the Holy Spirit, and I heard myself say that I had been crying out to God because I had been at the end of my rope. After we said our goodbyes I was reflecting on the conversation and remembered having seen an episode of Laverne and Shirley where they had to climb a rope in a gymnasium. A large diameter, straight rope was hanging from the gym ceiling and the students had to climb the rope and ring the bell at the top. That seemed like an impossible task to me.
The thought crossed my mind that my rope now is much longer than it was all of those years ago. It's not nearly so easy to get to the end of it... or even see the end of it. Not only that, but each of the tests and trials in life have placed a large knot in the rope upon which I can stand. God has marked my life so far with these rope knots so that even when my faith is weak or wavers, and I slip a bit lower on the rope, there are still other knots to stand on. The knots above also make it easier to climb back up...even when my strength wanes.
Regardless of how long you have been walking with the Lord, I challenge you to think about the times in your life where He has demonstrated His faithfulness. Each of these times when it was difficult, or so hard that you thought you were not going to make it, He was working behind the scenes and left a knot in your rope that you can stand on today.
In action movies when someone climbs a rope or crosses a rope bridge, someone always yells, "Don't look down!!"...just as the person being rescued looks down and becomes paralyzed by fear. Well, you are and I are the ones being rescued, but today the challenge is to take a long hard look down the rope of your life. Remember God's faithfulness and picture the vast volume of knots in your rope.
I am thankful today that God uses silly memories to re-assure me of His faithfulness! How many knots are in your rope? It is well.
Friday, July 29, 2011
Yes, I Said 5000
This has been a difficult day. Nick and I left for Vanderbilt about 6:00 a.m. We went through the usual drill of labs and chemo infusion. However, even though this is his 7th or 8th time to receive this particular drug, it was particularly hard on him today. We have been told that he is very blessed (something that we know, but that it's good to hear) that he hasn't had any pain from this drug so far. Many people, we are told, are so sensitive and have so much pain that they can not bear to be touched after this infusion. He is certainly not in that kind of pain, but he is in pain. He has been experiencing numbness in his fingers for some time, but now he is experiencing neuropathy pain in his feet. This is in addition to other pain and discomforts that have arisen over the last several weeks, and his just generally feeling yucky.
Up until today he has eaten well, but pain and nausea have put a cramp in his appetite. We have been told that in order to maintain his weight he needs to eat about 5000 calories a day. (Not a typo...five thousand.) That is more difficult to do than one might imagine. Even though he has been giving the 5000 a run for it's proverbial money, he has lost about 12 pounds since he first went to Vanderbilt.
There are many more details with which he is having to deal, but that should give y'all an idea of some of the specific prayer concerns. I really do realize that everyone who reads this has his or her own things to pray about. So, I just want to verbalize one more time that I am so thankful that you are taking the time to lift us up in prayer. Before this began I could not even have imagined how difficult a situation like this could be. How in the world do people go through the marathon trials in life without knowing Jesus?
Right this minute I am sitting in Nick's room. The only light in the room is from my computer screen and a sliver of light peeking through his slightly open door. The only sounds are the tapping of my fingers on the keyboard and his breathing heavily as he sleeps. I had checked on him several times since we got home about 3:00 p.m. He appeared to be asleep each time. So, I did not bother him. When Glenn got home I checked on him again and ran some errands with Megan. When I came up to give him his night time medicine I asked him if he had slept well. I found out then that he had been in more pain than I knew, and had had understandable anxiety about the pain. I asked him why he had not called me, or told me about it when I came to check on him. He said that he was trying to give me some time off. He was trying to take care of me.
After the meds and some plain noodles, I told him that I would stay until he fell sound asleep. There is just something comforting about not being alone. So, here I sit, and joyfully so. It is well.
Up until today he has eaten well, but pain and nausea have put a cramp in his appetite. We have been told that in order to maintain his weight he needs to eat about 5000 calories a day. (Not a typo...five thousand.) That is more difficult to do than one might imagine. Even though he has been giving the 5000 a run for it's proverbial money, he has lost about 12 pounds since he first went to Vanderbilt.
There are many more details with which he is having to deal, but that should give y'all an idea of some of the specific prayer concerns. I really do realize that everyone who reads this has his or her own things to pray about. So, I just want to verbalize one more time that I am so thankful that you are taking the time to lift us up in prayer. Before this began I could not even have imagined how difficult a situation like this could be. How in the world do people go through the marathon trials in life without knowing Jesus?
Right this minute I am sitting in Nick's room. The only light in the room is from my computer screen and a sliver of light peeking through his slightly open door. The only sounds are the tapping of my fingers on the keyboard and his breathing heavily as he sleeps. I had checked on him several times since we got home about 3:00 p.m. He appeared to be asleep each time. So, I did not bother him. When Glenn got home I checked on him again and ran some errands with Megan. When I came up to give him his night time medicine I asked him if he had slept well. I found out then that he had been in more pain than I knew, and had had understandable anxiety about the pain. I asked him why he had not called me, or told me about it when I came to check on him. He said that he was trying to give me some time off. He was trying to take care of me.
After the meds and some plain noodles, I told him that I would stay until he fell sound asleep. There is just something comforting about not being alone. So, here I sit, and joyfully so. It is well.
Tuesday, July 26, 2011
I Will Never Waver, Slip, Shake, or Fall Away From Him.
We have had a couple of good days. I think that I am beginning to realize that symptoms and difficulties come in fairly predictable patterns. Hopefully, we are accurately noting, as disconcerting events befall us, that we have experienced this particular thing before, and it too shall pass. Yesterday afternoon Nick seemed as close to normal as I had seen him in a while. He walked and climbed the stairs easily. He laughed and played a computer game. Let me just say...this did a Mom's heart good.
Megan and Nick just left for Vandy. A day to myself will be nice. Today is the day that he gets the specific chemo that caused the clotting problems the last time. It's no big deal to receive the chemo, but I would appreciate prayer cover so that it would not ravage his clotting system like before. It just needs to get to work and target those rogue white cells that are behaving badly! Any side effects that don't get slammed by the prayer cover would not show up until next week.
Perspective is such a huge factor in all of life. Psalm 30:5 came to mind as I pondered this morning: "For His anger endureth but a moment; in His favour is life; weeping may endure for a night, but joy cometh in the morning." I used the King James version because it coincides with the Hebrew concordance that I use. I looked this scripture up because I remembered the part about weeping and joy coming. However, I don't know that I had even noticed the part that said, "in His favour is life." The word that is translated "favour" literally means "delight." The root word of "delight" means "to be pleased with; specifically to satisfy a debt; to be acceptable."
I did lots of scripture digging this morning. So, I'll just share with you what I dug out of Psalm 30:1-6. It's my perspective for the day.
Psalm 30:1-6 (Lori Taylor Scripture Digging version)
1 I will praise you Lord. You have lifted me away from danger, and not let any haters find joy in my situation.
2 O Lord, my God. I shouted to You because of my lack of freedom, and you showed up, not only as the Great Physician, but you mended and cured me in every way possible.
3 O Lord, you brought up the very essence of who I am from the pit of hell, and You have kept me alive, revived, and repaired so that I will not go back to that prison.
4 Sing praises to the Lord everyone. Give thanks every time you remember how clean and Holy that He really is.
5 If He gets angry it only lasts for the blink of an eye. When I delight in Him and He delights in me - I am alive, fresh, strong, repaired, and nourished. There will be times of sadness and trouble, but they will be followed quickly by joy...just as assuredly as the morning follows the night.
6 And in my security in the faithfulness of God I said, I will never waver, slip, shake, or fall away from Him.
Given the above, how can it not be well? It is well.
Megan and Nick just left for Vandy. A day to myself will be nice. Today is the day that he gets the specific chemo that caused the clotting problems the last time. It's no big deal to receive the chemo, but I would appreciate prayer cover so that it would not ravage his clotting system like before. It just needs to get to work and target those rogue white cells that are behaving badly! Any side effects that don't get slammed by the prayer cover would not show up until next week.
Perspective is such a huge factor in all of life. Psalm 30:5 came to mind as I pondered this morning: "For His anger endureth but a moment; in His favour is life; weeping may endure for a night, but joy cometh in the morning." I used the King James version because it coincides with the Hebrew concordance that I use. I looked this scripture up because I remembered the part about weeping and joy coming. However, I don't know that I had even noticed the part that said, "in His favour is life." The word that is translated "favour" literally means "delight." The root word of "delight" means "to be pleased with; specifically to satisfy a debt; to be acceptable."
I did lots of scripture digging this morning. So, I'll just share with you what I dug out of Psalm 30:1-6. It's my perspective for the day.
Psalm 30:1-6 (Lori Taylor Scripture Digging version)
1 I will praise you Lord. You have lifted me away from danger, and not let any haters find joy in my situation.
2 O Lord, my God. I shouted to You because of my lack of freedom, and you showed up, not only as the Great Physician, but you mended and cured me in every way possible.
3 O Lord, you brought up the very essence of who I am from the pit of hell, and You have kept me alive, revived, and repaired so that I will not go back to that prison.
4 Sing praises to the Lord everyone. Give thanks every time you remember how clean and Holy that He really is.
5 If He gets angry it only lasts for the blink of an eye. When I delight in Him and He delights in me - I am alive, fresh, strong, repaired, and nourished. There will be times of sadness and trouble, but they will be followed quickly by joy...just as assuredly as the morning follows the night.
6 And in my security in the faithfulness of God I said, I will never waver, slip, shake, or fall away from Him.
Given the above, how can it not be well? It is well.
Monday, July 25, 2011
"Kiss the Son, Lest He Be Angry..."
This has been a particularly difficult weekend. The previous statement is true. However, I do not necessary understand why it is true. I am learning so much while walking through this trail with my family, and it is glaringly obvious how much more there may be to learn. There is no manual for how one will feel or react in any given moment or situation when one's child has a "catastrophic" illness.
Early on in this process, Nick was diagnosed about 6 weeks ago, we were all walking in such grace and peace. I really felt as though God were carrying me. Please do not misunderstand, we are still smack dab in the middle of the peace that passes understanding. God IS FAITHFUL! However, especially this weekend, I have gone through a time where, as my Nana would have said, "I was as weak as water." We did have some added trials during the last week. Nick started having some episodes that were more than a bit disconcerting, and those still have not been fully explained. He would say to me, in a slowed voice, "Mom, something is very wrong. I'm scared." Just by looking at and listening to him I could tell that things were not right. It was a helpless feeling. I did all of my nurse-wanna-be evaluations: BP,temp,pulses,pupil reactions,strength tests, mental status orientation, listened to his heart & lungs,skin color,capillary refill..etc. I couldn't find anything, to explain what was happening, but it was happening none-the-less. There is more to it than that, but that gives you the picture from both his and our sides.
The longest episode was Friday night. We went to the JMCGH E.R., and they admitted him, but thankfully found no pathological reason for the episodes. It is probably related to the chemo and steroids. That is a much better answer than the other possibilities. He came home again Saturday evening.
During my time with the Lord this morning I felt lead to read Psalm 2. It's a Psalm (obviously from the Old Testament) about kings and rulers of the earth setting up rebellious plans "without a chance of success" against Jesus, Himself. This Psalm affirms that Jesus is the Son of God, and clearly states that as men plot evil, He laughs at them from Heaven. The Line,"12 Kiss the Son, lest He be angry, and you perish in the way..." has new meaning to me today. The word, kiss, in that verse literally means to attachment yourself. It is basically saying that without intimately attaching ourselves to Jesus we will perish. It also goes on to say, "12....Blessed are all those who put their trust in Him."
I can tell you, from the center of the battle, that I am so thankful for the grace of God that made it possible to enter this season of our lives already attached to Jesus. We don't have the strength on our own. II Corinthians 12:9 has been a favorite verse of mine for as long has I can remember: "And He said unto me, My grace is sufficient for thee; for My strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
If you find yourself reading this today without an intimate attachment to Jesus...this is the day. He died a horrible death on the cross...literally gave His life so that you could have the opportunity of eternal life. He then rose again to life after three days. You don't have to be cleaned up and sin-free to come to Him. Starting this intimate relationship with Him is as easy as believing that He is the Son of God and that He gave His life for you, and admitting to Him that you need Him to be your Savior. The Bible says that when you believe, you become a new creation. He will help and guide you into living that "cleaned up" life as your relationship progresses.
Everyone's life has trials. Go ahead and attach to Him today. It is well!
Early on in this process, Nick was diagnosed about 6 weeks ago, we were all walking in such grace and peace. I really felt as though God were carrying me. Please do not misunderstand, we are still smack dab in the middle of the peace that passes understanding. God IS FAITHFUL! However, especially this weekend, I have gone through a time where, as my Nana would have said, "I was as weak as water." We did have some added trials during the last week. Nick started having some episodes that were more than a bit disconcerting, and those still have not been fully explained. He would say to me, in a slowed voice, "Mom, something is very wrong. I'm scared." Just by looking at and listening to him I could tell that things were not right. It was a helpless feeling. I did all of my nurse-wanna-be evaluations: BP,temp,pulses,pupil reactions,strength tests, mental status orientation, listened to his heart & lungs,skin color,capillary refill..etc. I couldn't find anything, to explain what was happening, but it was happening none-the-less. There is more to it than that, but that gives you the picture from both his and our sides.
The longest episode was Friday night. We went to the JMCGH E.R., and they admitted him, but thankfully found no pathological reason for the episodes. It is probably related to the chemo and steroids. That is a much better answer than the other possibilities. He came home again Saturday evening.
During my time with the Lord this morning I felt lead to read Psalm 2. It's a Psalm (obviously from the Old Testament) about kings and rulers of the earth setting up rebellious plans "without a chance of success" against Jesus, Himself. This Psalm affirms that Jesus is the Son of God, and clearly states that as men plot evil, He laughs at them from Heaven. The Line,"12 Kiss the Son, lest He be angry, and you perish in the way..." has new meaning to me today. The word, kiss, in that verse literally means to attachment yourself. It is basically saying that without intimately attaching ourselves to Jesus we will perish. It also goes on to say, "12....Blessed are all those who put their trust in Him."
I can tell you, from the center of the battle, that I am so thankful for the grace of God that made it possible to enter this season of our lives already attached to Jesus. We don't have the strength on our own. II Corinthians 12:9 has been a favorite verse of mine for as long has I can remember: "And He said unto me, My grace is sufficient for thee; for My strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
If you find yourself reading this today without an intimate attachment to Jesus...this is the day. He died a horrible death on the cross...literally gave His life so that you could have the opportunity of eternal life. He then rose again to life after three days. You don't have to be cleaned up and sin-free to come to Him. Starting this intimate relationship with Him is as easy as believing that He is the Son of God and that He gave His life for you, and admitting to Him that you need Him to be your Savior. The Bible says that when you believe, you become a new creation. He will help and guide you into living that "cleaned up" life as your relationship progresses.
Everyone's life has trials. Go ahead and attach to Him today. It is well!
Friday, July 22, 2011
Home Again, Home Again, Jiggety-Jig
We are home once again. We shouldn't have to go back until next Tuesday. Because of the colonies of Leukemia cells that were found on the flow cytometry, Nick will have to undergo a couple more weeks of the initial types of chemotherapy. They have also prescribed that his doses of steroids be bumped sky high again...which means that we will have to begin again on the weening process. Part of the reason for this may be that he is being treated with the pediatric protocol, but, at 22, he is on the cusp between pediatric patient and adult patient. They usually follow the pediatric protocol for anyone under 26. (I don't know why that is, but people much smarter than I have deemed it to be so.)
The chemo that he will receive next Tuesday is the one that has caused him all of the problems with clotting. It doesn't produce the same effects in everyone. So, lets just all agree in prayer that this round will not produce the same side effects. The good thing about this is that we are all aware of how it affected him before. So, God's visible intervention on this matter or not...he will be fine. Sometimes God's intervention shows up in wisdom learned from past trials. (Wow, I needed to hear what I just typed...for a number or reasons!)
Today has been good and peaceful. The nurses at Vandy accessed Nick's new port for the first time. (They stuck a needle through his skin into the port.) It was painful because the site is covered in a deep purple bruise, but when it heals it should be an easy thing to endure.
Can I just tell y'all that I dearly love this young man. I have always felt that I had a good relationship with all three of our children. I love and cherish them all! God has made mighty and men and women of God out of them, in spite of our short comings as parents. They are all so very different, but are alike in a number of ways as well. I guess that it may have been easier over the years for me to understand our girls, because I am a girl. (I know...I'm using the term as a gender denotation...not an age indicator.) However, this time period has given me a unique opportunity to get to know our son in ways that I'm not sure I would otherwise have been given. He is deep, kind, tough as nails, intelligent, patient, wise, and transparent. I'm sure that this situation has probably matured many of those qualities, but they are accurate descriptors of who he is. I see Jesus in him. It is well!
The chemo that he will receive next Tuesday is the one that has caused him all of the problems with clotting. It doesn't produce the same effects in everyone. So, lets just all agree in prayer that this round will not produce the same side effects. The good thing about this is that we are all aware of how it affected him before. So, God's visible intervention on this matter or not...he will be fine. Sometimes God's intervention shows up in wisdom learned from past trials. (Wow, I needed to hear what I just typed...for a number or reasons!)
Today has been good and peaceful. The nurses at Vandy accessed Nick's new port for the first time. (They stuck a needle through his skin into the port.) It was painful because the site is covered in a deep purple bruise, but when it heals it should be an easy thing to endure.
Can I just tell y'all that I dearly love this young man. I have always felt that I had a good relationship with all three of our children. I love and cherish them all! God has made mighty and men and women of God out of them, in spite of our short comings as parents. They are all so very different, but are alike in a number of ways as well. I guess that it may have been easier over the years for me to understand our girls, because I am a girl. (I know...I'm using the term as a gender denotation...not an age indicator.) However, this time period has given me a unique opportunity to get to know our son in ways that I'm not sure I would otherwise have been given. He is deep, kind, tough as nails, intelligent, patient, wise, and transparent. I'm sure that this situation has probably matured many of those qualities, but they are accurate descriptors of who he is. I see Jesus in him. It is well!
Thursday, July 21, 2011
Possible Leotards and a Cape??
Here we are back at Vanderbilt. We are currently in the pre-op holding area waiting for them to take Nick to have a power port installed. I may have to get busy and make him a super hero leotard and cape. A power port sounds like an addition that would certainly warrant at least a cape??!! I'll have to confirm that with Nick as soon as he regains his full faculties after the procedure.
A power port is a small non-reactive metal cup with a thick silicone plug on the front and a catheter extending from the side. The cup will be placed under Nick's skin, just below his right collar bone. The catheter will be placed inside one of the large veins leading to his heart. When he receives chemo or needs blood drawn for the next three years, it will only take a needle stick through his skin and through the silicone plug. This is much easier and less painful to deal with than repeated IV's or a Picc line. Because the port will be under his skin, he will be able to take a shower without being taped up, and it will remain sterile. The "power" part of this port means that it can be used for procedures that require a quick rate of infusion...like a CT with contrast.
I haven't written in a few days because I just simply did not feel like writing. We found out Tuesday that the bone marrow biopsy that he had last Friday showed some leukemia cell colonies on the more sensitive flow cytometry test...which means that he is not in deep remission yet. I am certainly thankful for the more accurate tests. Nick's Dr. made the comment that several years ago he would have just assumed that deep remission had been achieved, and the assumption might have had serious consequences. It's good to know the facts and be able to act upon them with wisdom. However, I would not be telling the truth if I said that I was not experiencing some less than pleasant emotions. I still know that this will all be O.K., but I want it all to be O.K. NOW!! How's that for being honest??
(I wrote the first part of this earlier in the day)
Nick is now finished with the day. We are at a hotel. We didn't pack to stay in town, so we had no pillows to be able to stay at the condo. (I use a lot of pillows.) Before they took him back for the port installation he had some unusual neuro symptoms. The port was successful, but the neuro stuff was not peaceful at all! We ended up having a head CT this evening, and will find out results tomorrow.
While he was getting the port, I went to the cafeteria. (I had handled all of the scary stuff with supportive grace and pastor-like peace.) It was about 2:00 and neither of us had eaten all day. I got some chicken, sweet potatoes, and a Dr. Pepper, and sat down for a peaceful moment. I took one bite, and opened the Dr. Pepper...KABLOOOOOW! It exploded...wet from head to toe...sandals squishing with sticky wetness. That is when I lost it. The ugly cry began in earnest. I couldn't carry my meal, the remaining Dr. Pepper, and my bags at the same time. So, I left the food and went to the napkin station. Crying loudly, mascara running, squeaking and squishing with every step, I used nearly an entire hospital sized napkin dispenser trying to sop up my blouse, skirt, face, hair and shoes. The people around me must have thought, "Boy, she really loved that Dr. Pepper." I thought I had myself together, so I headed back to post-op. I stepped out into the hall walking with a passion, and lost it again. Do you know how long that hall is? It must be 10 city blocks long (slight exaggeration.) It was like the scene in Alice in Wonderland where the perspective of the hall changes. It kept getting longer and longer. I thought it would never end...but it finally did, and I survived.
At the end of this day, I am thankful for the tension release that a good cry brings. I still want this chapter in our lives to end well now, but I realize once again that when God requires us to wait it is not the same as His saying no. "Wait," just brings the result in His perfect timing. I am thankful that my son is comfortable in his bed with the remnants of pasta that he greatly enjoyed clinging to his t-shirt. (We didn't bring changes of clothing.) I am so very thankful that God is God, and that I am not! It is well!
A power port is a small non-reactive metal cup with a thick silicone plug on the front and a catheter extending from the side. The cup will be placed under Nick's skin, just below his right collar bone. The catheter will be placed inside one of the large veins leading to his heart. When he receives chemo or needs blood drawn for the next three years, it will only take a needle stick through his skin and through the silicone plug. This is much easier and less painful to deal with than repeated IV's or a Picc line. Because the port will be under his skin, he will be able to take a shower without being taped up, and it will remain sterile. The "power" part of this port means that it can be used for procedures that require a quick rate of infusion...like a CT with contrast.
I haven't written in a few days because I just simply did not feel like writing. We found out Tuesday that the bone marrow biopsy that he had last Friday showed some leukemia cell colonies on the more sensitive flow cytometry test...which means that he is not in deep remission yet. I am certainly thankful for the more accurate tests. Nick's Dr. made the comment that several years ago he would have just assumed that deep remission had been achieved, and the assumption might have had serious consequences. It's good to know the facts and be able to act upon them with wisdom. However, I would not be telling the truth if I said that I was not experiencing some less than pleasant emotions. I still know that this will all be O.K., but I want it all to be O.K. NOW!! How's that for being honest??
(I wrote the first part of this earlier in the day)
Nick is now finished with the day. We are at a hotel. We didn't pack to stay in town, so we had no pillows to be able to stay at the condo. (I use a lot of pillows.) Before they took him back for the port installation he had some unusual neuro symptoms. The port was successful, but the neuro stuff was not peaceful at all! We ended up having a head CT this evening, and will find out results tomorrow.
While he was getting the port, I went to the cafeteria. (I had handled all of the scary stuff with supportive grace and pastor-like peace.) It was about 2:00 and neither of us had eaten all day. I got some chicken, sweet potatoes, and a Dr. Pepper, and sat down for a peaceful moment. I took one bite, and opened the Dr. Pepper...KABLOOOOOW! It exploded...wet from head to toe...sandals squishing with sticky wetness. That is when I lost it. The ugly cry began in earnest. I couldn't carry my meal, the remaining Dr. Pepper, and my bags at the same time. So, I left the food and went to the napkin station. Crying loudly, mascara running, squeaking and squishing with every step, I used nearly an entire hospital sized napkin dispenser trying to sop up my blouse, skirt, face, hair and shoes. The people around me must have thought, "Boy, she really loved that Dr. Pepper." I thought I had myself together, so I headed back to post-op. I stepped out into the hall walking with a passion, and lost it again. Do you know how long that hall is? It must be 10 city blocks long (slight exaggeration.) It was like the scene in Alice in Wonderland where the perspective of the hall changes. It kept getting longer and longer. I thought it would never end...but it finally did, and I survived.
At the end of this day, I am thankful for the tension release that a good cry brings. I still want this chapter in our lives to end well now, but I realize once again that when God requires us to wait it is not the same as His saying no. "Wait," just brings the result in His perfect timing. I am thankful that my son is comfortable in his bed with the remnants of pasta that he greatly enjoyed clinging to his t-shirt. (We didn't bring changes of clothing.) I am so very thankful that God is God, and that I am not! It is well!
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