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Joel’s counts are still low, but they were high enough for us to start chemotherapy today.  Basically Joel’s ANC is still under three hundred, which I realized means Joel has now gone almost six weeks with a very limited immune system and no fevers!  Praise God.  As you all recall we used to be admitted to the hospital with a fever every time Joel’s counts dropped.  I really believe those days are behind us now.  God showed me to pray against fevers a few months ago, and things really turned around after that.

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This is another round of oral chemo at home, this is the last week we will do this kind of chemo, and the rest will all be given through iv in the hospital.  I wasn’t sure how Joel would do with it, since the last round started out rocky, but by then end of it he was just amazing at swallowing the chemo and patiently opening his mouth for more.  Today was so easy.  He picked up right where he left off, helping us every step of the way.  Ryan and I were both so pleased to be able to give Joel his chemotherapy without having it be such a huge ordeal.

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I’m not sure if I had given any updates about Joel’s eye surgery.   We had originally planned the surgery for September 16th, which is coming up very quickly, but I had forgotten that Ryan will be out of town, so we are going to delay and try to do the surgery in October.  Please keep praying for Joel’s left eye (his sixth nerve and the eye muscle), the doctors don’t expect anything to change between now and the surgery, but I know that God can change things for Joel at any time.

We go in tomorrow to check Joel’s counts again, and most likely begin chemotherapy even if his counts are low.  I would definitely feel much better about starting chemo if his counts were higher.  Right now if you were to rub your hand over Joel’s head you would feel stubble.  He is definitely growing some hair because it used to feel very smooth.  It still feels very smooth in the back where the radiation was targeted, but perhaps in a few weeks we will see new hair growth on top of Joel’s head.

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We have been meeting with people that run the early intervention therapy for our county.  They came on Tuesday to do an assessment of Joel’s development.  As I expected, Joel showed 50-70% delays in every category.  I am very excited to be able to start physical, occupational, and speech therapy for Joel.  They will come to our home and work with Joel and teach me things I can do to help Joel reach his developmental milestones.  One tip they gave us at the assessment was that Joel can sit on a short stool and practice standing and sitting from this elevated position.  We tried this tonight and Joel loved it.  He would grab on to anything and then stand up by himself.  He was so proud of himself for standing up that he laughed and laughed.  He stood up and sat down several times.  (When he sat down he would kick his feet back and forth in excitement.)  We later repeated all of this for daddy when he got home.  It amazed me how much a simple tip like that can help Joel so I look forward to seeing Joel make lots of progress when we have experts to teach us how to help him.

Joel’s counts were too low to begin treatment again today.  We are testing his counts again on Thursday and they plan on starting chemotherapy on Thursday if his platelets are even as high as 40, today they were 29.  (The normal cut off to start treatment is a platelet count of 100.)

Joel had his eye appointment today.  I guess the best way to describe my feeling after the appointment is disappointed resignation.  I feel much like I felt when we were told that Joel would indeed be having surgery to install a permanent shunt, definitely disappointed but resigned to the fact that this was the decision that had been made.  (Lucky for me that time God came in and changed the story just after we had signed the consent forms.  I would love to see God’s intervention in this situation as well.)  It has been over seven months since Joel’s surgery to remove his tumor.  The nerves that were damaged during surgery almost always recover as much as they ever will by six months.  Joel’s eye hasn’t not shown any marked improvement in the last three months, so both our oncologists and our ophthalmologist agree that it is time to surgically correct Joel’s vision.  Right now Joel only sees with one eye at a time.  His brain will not allow him to have double vision so it switches from eye to eye.  The sooner Joel’s vision is corrected the better chance his brain has to make the adjustment to seeing with both eyes at the same time.  The good news is that Joel is still using both eyes very effectively  (this was the reason for all of the patching.)

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There are two kinds of surgeries they can do to correct Joel’s vision, the first is a recession/resection surgery, which is the surgery they prefer to do.  This surgery only works well when the eye has full or near full range of motion,  the other is a transposition I( could tell this was not the preferred surgery but it is necessary if the eye does not have enough range of motion before surgery.)  Our ophthalmologist said Joel’s eye was in a gray area.  He has very close to the range of motion needed for the preferred surgery but not quite.  She consulted with two other ophthalmologists who both agreed that Joel should have the transposition.  Unfortunately if we were to try a recession/resection and find it to be unsuccessful they can not go on to do a transposition because they try not to interrupt all the blood flow (four main muscles) that go to the eye.  I’m sure that this is all completely confusing to everyone, but what it boils down to is that the recession/resection is a more measured and precise procedure that has very predictable results.  The transposition is an all or nothing procedure with less predictable results.   In a recession/resection they would shorten/strengthen the muscle to the left of Joel’s left eye, and weaken/ lengthen (I think) the muscle to the right of Joel’s left eye, thus pulling his eye more to center.  In the transposition the muscles to the top and bottom of Joel’s left eye will be pulled over to the left side of his eye and joined together, having a similar effect.

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The recommendation is definitely that Joel have a transposition and the date that our neuro-oncologist would like to see this happen is September 17th or 18th.  I feel less sure than ever that surgery will be able to fully correct Joel’s vision, but all I can do is pray.  I once saw a vision, just the shortest flash of a picture, which has only happened to me one other time in my lif,e (I almost never see pictures of any kind) in fact, if you told me to close my eyes right now and picture Ryan or any of the kids, I would not be able to do it, but several months ago  I was being quiet and listening for God, not quite praying and I closed my eyes and saw Joel so clearly like a photograph.  At the time he looked about the same age but much rounder (remember this was several months ago back when we were first talking about putting Joel on IV nutrition so he was very scrawny at the time.)  Joel was smiling very big and looking at me over his left shoulder.  It was so quick, that after it passed I had to think about it to realize that in the vision I saw he was looking at me out of the left corners of his eyes, and his eyes were perfect!  I never mentioned this vision because I wasn’t sure what to think of it.  I felt so encouraged, so sure Joel’s eyes would be perfect.  I assumed God would heal Joel’s eyes, but then I wasn’t sure why I saw the vision.  I did not feel like I was supposed to stir up my faith or pray about it more.  It just felt like something I should hide away in my heart and simply wait.  I shared this with just two or three people, not even Ryan until today.

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My point in mentioning it is that this surgical option for Joel does not sound like a sure thing at all.  They told me that chances are his eye would be more centered but he would lose range of motion on both sides of his eye.  I was trying to get a sense of the cosmetic result, how “normal” Joel would look after the procedure, and I can not say that I am sure at all about this.  In my aforementioned resigned disappointment I remembered the vision I had of Joel and I felt a little better, a little more secure that God showed me that picture of Joel for a reason.  I know I have written many times about how much Joel’s vision concerns me.  The picture I saw of Joel’s eyes looking perfectly at me with his pupils at the very corners of his eyes, at the very least settles my anxiety.  I am not sure how this will unfold.  Right now it looks like Joel will have a transposition, but I have been surprised before at plans changing at the last minute, and I would love to see a total supernatural healing, but I will just keep moving forward and whenever I become too nervous about the surgery, or the expected (and unexpected) outcomes I will remember what I saw, and quiet my heart, remembering that God is so much bigger than anything I can plan for or predict.  I have never felt much of an urge to pray about Joel’s vision, even though it is the thing that most bothers me.  If you feel stirred to pray for his eyes, please do.  I try not to strive too much in areas that I haven’t felt God’s direction, because I have seen how faithful God is when I pray specifically in the areas where I am directed to pray.

Joel is getting a blood transfusion today.  We are going to check his counts again on Monday to see if they are high enough for him to start chemotherapy.  Whenever he is able to start chemotherapy it will be the beginning of his 23rd week of treatment.  (This is out of a total of 54 weeks of treatment.) So, by my calculations, we have a minimum of 8 more months before Joel is done with treatment, but it will likely be closer to 10 months if he continues to experience the kinds of delays he has had so far.

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The nurse told me today that they suspect one reason his counts may have stayed low for so long this time around is that we gave Joel an iv chemo to begin his week of oral chemo last time, then we had the problems with the chemo and Joel got the fever that landed him in the PICU so we delayed the oral chemo for a week.  The doctor suspects that the IV chemo had already begun to knock out Joel’s counts, and then a week later we gave him the oral chemo which knocked him out even further.  I am just glad to hear there is a theory at all for his sustained low counts because it has been pretty puzzling for me, and caused me to really not want to begin another round of this particular chemotherapy.

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Yesterday Joel’s ANC was 42 and today it is 453, so that was a really huge improvement in his white blood cells and neutrophils.  This makes us very happy because it means he is quite a bit more able to fight this cold he has and any other germs that may come his way.  Since yesterday, Joel’s platelets stayed the same and his hemoglobin dropped, which is why we are moving forward with the blood transfusion today.

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Joel’s eyelashes continue to grow longer.  He has gained a little weight again.  Up from 9.2 kilos last week to 9.3 kilos this week.  Joel is still making sounds more often, lots of “ma mas” and he keeps looking stronger.  I have seen no improvement yet with his constipation, but hopefully it will ease soon.  Tomorrow is our big eye appointment.  I will be sure to report whatever they tell us they plan to do about Joel’s left eye moving forward.  It is not too late for God to miraculously heal his eye and keep us from surgery.  As, I always move forward medically while expecting God to intervene at any moment, even the last moment.  I was reminded again yesterday of just how grateful I am that Joel was spared a permanent shunt at the last minute, and all the complications that might have come along with such a surgery.

There have been times in this journey with Joel that I have found an eloquent and elaborate faith.  God has shown me how to believe Him for amazing things that left me more excited about His power than disappointed in my circumstances.  Lately I have felt much differently than I have felt at any other point so far.  I find myself easily emotional and often sad.  Questions that never seemed worth asking before like, “why us?” “how can this be our life?”  dance around the forefront of my brain these days, ready to land when given any clearance whatsoever.

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Today I find myself with the basest faith.   I am stripped down to where the only comforting confession is, “God is good, and He loves us.”  I desperately want more than this to cling to, I want a tower of expansive faith that pulls me entirely out of this hospital room with Joel, but here I am.  It is a safe place to stand.  I know that while I know God’s love and His goodness, even when every other answer and explanation is hidden, I do not risk dropping into shaky theology or doubting truth.

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Since Joel was first diagnosed I began reading the book of Job, not very consistently but from time to time as I have been reminded of it.  I heard a commentary of Job that boiled down its central message to “The Righteous will live by faith.”  I find a sad comfort in some of the statements Job made because there are devastated places of my heart that echo his thoughts, and it is comforting to know that even with the things he exclaimed, God found him to be faithful through his trial.  There are seasons where I need to know that sharing the sentiment from Job 23: 16-17 “For God made my heart weak, And the Almighty terrifies me, because I was not cut off from the presence of darkness, And He did not hide deep darkness from my face.” does not somehow disqualify me from this walk of faith with God, whom I love.

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When I know in my heart that God is good and cancer is evil, and God gives only good gifts so this cancer can not be His will, and yet here we are still fighting cancer, and I am trying desperately to reconcile my belief that God made a way for us to have His perfect will and we are trying to receive it, but even in the fight He loves us, and continues to use our suffering for His glory it is something not unlike joy to read Job 26:14 “Indeed these are the mere edges of His ways, And how small a whisper we hear of Him! But the thunder of His power who can understand?”

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When I am afraid to linger too long on my own disappointment, and avoid looking at everything we have lost because I do not want to find myself despairing, I love to let Job speak the things I refuse to let my heart materialize.  When Job describes his life before his affliction in Job 29:6  as the time “When my steps were bathed in cream, and the rock poured out rivers of oil for me.”  Something in my spirit resonates with this description of favor lost.  Even though my mind quickly fills in the uncomfortable silences with all of the blessings God has poured out on our family in the midst of this struggle.  While I could not name a single person who has been anything but gracious and sympathetic to our family, there is still a strong sense of being alone in a situation that no one else can ever fully understand, and it causes me to resonate with Job 12:5 “Men at ease have contempt for misfortune as the fate of those whose feet are slipping.”

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It is a comfort for me to know, in this season where sadness is too near and hope so hard to cling to that these feelings are not unique to me.  They are human feelings, common to everyone, even the faithful.  It is strange to see how unconnected my emotions are to the truth of my experience.  Joel has been doing so well lately, and things have been so easy for us recently but there is no accounting for this in my disposition.  I will continue to stand in faith, and not despise the simple truths.  I will continue to rejoice that “God is good and He loves us,” until I am given something new to declare, and I will do my best to trust like Job did, that “(God) knows the way that I take, when He has tested me I shall come forth as gold.”  (Job 23:10)

We had Joel’s blood work done in town again today.  It is not as smooth a process as going to children’s hospital, but if saves me almost two and a half hours.  We learned that Joel’s counts are very low.  The assumption is that he will need a blood transfusion tomorrow, and that it will be quite some time before we can start chemo again.  Please pray for Joel that he is protected from all sickness and disease while we wait for his counts to come up.  I’m not sure how much longer they will be willing to wait since it has already been four and a half weeks, but I’m sure I’ll know a lot more when Joel and I go in for our blood test and likely four hour transfusion tomorrow.

I am embarrassed for Joel as I write this update.  I know he’s not embarrassed now, but one day when he’s like 14 and I let him read through the story of his battle with cancer, I imagine he will not be too happy with me for this post.  They have warned me throughout Joel’s treatment that he could struggle with constipation.  The particular chemotherapy that is supposed to cause constipation (vincristine) is one that he has not had in a long time, and in fact every time he had that chemotherapy he seemed to have very easy bowel movements.  For the past several weeks Joel has seemed a little constipated, nothing major up until now, just some grunting and discomfort as far as I could tell.  When I initially mentioned it at a clinic visit they told me that the effects of the vincristine can be cumulative.

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Last night, Joel’s diaper had blood in it.  It was the first time we had ever seen this and, as you can imagine, it made us quite nervous.  We called the hospital and they said it was most likely caused from an anal fissure.  They told us to give Joel miralax in his bottles to try to soften his stools and make it easier for him to have bowel movements.  We also have to watch his platelet count even closer now, since there is an opportunity for bleeding.  This next round of chemo has been pushed back because of low platelets even four weeks after the last round, and the next round of chemo has a similar effect on the platelets.

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Just now, I watched Joel struggle, strain and grunt to have a bowel movement this morning.  I am sure the miralax we gave him last night has not had a chance to work yet, but it is still heartbreaking to watch Joel be in pain and not be able to help.  Very little of Joel’s treatment has caused him any sort of visible and acute pain like this; although I’m sure the nausea made him quite uncomfortable.  Anyway, I would really appreciate prayers for Joel’s digestive system that it would work properly and counteract any of the constipation that is a symptom of his treatment.

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*** 11:10 am update.  After that last post, I changed Joel’s diaper and found no blood, but only a very small stool, meaning that all that struggling produced very little .  Poor guy.***

I called the hospital this morning to make sure that it made sense to take Joel in today.  They agreed with me that it is too soon after the platelet infusion to be able to decide anything today, so they are having me come back in on Wednesday.  This may be only the second time in Joel’s treatment so far that we have had to delay therapy for two weeks because of low counts.  (We get one week delays pretty often.)

For the past few days we had noticed little bruises on Joel’s head, and so yesterday morning we decided to call the hospital to see if we should have Joel’s platelet level checked.  While on the phone with the doctor we noticed petechiae on Joel and knew that we were most likely looking at a platelet infusion.  They did ask us to get a CBC run, a blood test, and we decided to try to do this at our local hospital.  Unfortunately we ended up waiting over an hour in the lounge for the orders to be faxed over.  Also, they did not know how to draw blood from a broviac, luckily I had anticipated this and brought all the supplies I needed to draw Joel’s blood myself.  So, I drew Joel’s blood they put it in their tube and sent it off for the test while we went to lunch.  It turned out that Joel’s platelets were low enough to need a platelet infusion, so Ryan drove him to the Children’s hospital.  Everything there took about twice as long as it needed to and I had my brother watch Caleb and Isaac so that I could go to a bachelorette party I had been looking forward to.  Everything worked out fine in the end, it just wasn’t a fun way to spend a Saturday.  Also, I’ve been wondering how this will effect our plans to move forward with chemo this week.  I’m pretty sure the platelets they give Joel give him a boost for 48 hours but then things can drop back down.  Our appointment tomorrow morning will be 39 hours after the infusion, so I’m not sure if they’ll even be able to tell enough about his levels to give us the go ahead for chemo or not.  I guess I’ll call them in the morning on my drive down!

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Joel is very happy and still has a great appetite.  Also, this Thursday is his eye appointment where I anticipate they will decide to schedule a surgery unless something drastic changes.  Also with Joel having platelet levels this low 4 weeks after his last round of chemotherapy it makes me a little nervous about scheduling the surgery since right now his counts aren’t following the usual patterns.