Some specific ways to help.
31 May 2010
Today is Memorial Day. I felt it an appropriate time to speak of a request for John McKay's angelversary. (That's a nice word I picked up from another bereaved parent.) I am making the following request on behalf of John McKay:
On the 17th of December, in memory of John McKay Kunz, would you please serve in the temple if you are able. We are asking 6 months in advance to allow you time to ready yourselves. To those of you who cannot serve in the temple that day, will you please find some LDS (Church of Jesus Christ of Latter Day Saints) missionaries and meet with them sometime on that day to have them explain to you why we (including John McKay) feel this is the most important service you can give to honor his memory. Please pass this request on to any and all you think might be touched by John McKay's story. I am certain that John McKay too will be in the temple that day.
25 Dec 2009
I have debated what to do with this website. I felt the last entry too abrupt to be the final entry. I feel that to continue it would be no longer John McKay updates but family updates. Although John McKay is now doing a lot, we have no details to share. I can say that I have had communicated to me the joy and excitement he is currently feeling. His funeral services went very well. Lori was amazing as she was able to do her part and interject humor as she shared John McKay's life with the hundreds who attended. I was very impressed with Wesley's best friend memories. That was the part of the funeral wherein I learned more about the deceased. James stood up before that audience and held them captivated while he spoke without notes. My sister's prayer was so perfect. I thank Roger and Geno at the cemetery who so graciously allowed me (and Alan and Wesley) to help bury John McKay. And, thanks to Dave, we left a marker there in the Bountiful City Cemetery. I was blessed to be there for the birth, death and burial of John McKay.
Once again our thanks to so many who touched his and our lives. Some of you I'll never know until the next life. I'm grateful to you for sharing. John McKay died firm in his testimony and I write this entry firm in mine. It is not just a possibility, it is a reality that we will be reunited in the resurrection. (If you have questions about this, just ask your local Church of Jesus Christ of Latter-Day Saints missionaries.) This website has always been a one-way form of communication but I suppose you could send an email to the postmaster of the site if you really felt desire to communicate with us. I intend to leave this site up. I don't know if I'll post again or not. But, I hope it stands as a legacy to the wonderful life John McKay led. Merry Christmas.
17 Dec 2009
John McKay died tonight about 7:15 p.m. There will be a viewing at Lindquist's on Tuesday evening from 6 to 8 p.m. and the funeral will be at 1:00 p.m. Weds, 23 Dec 2009 in the 36th Ward Building.
16 Dec 2009
The new drug cocktail continues to work wonders. I'm beginning to adjust to sleeping through the night. Seriously though, as a Father, it is such a strong instinct to take care of the needs of your family and I have felt remiss as I couldn't protect John McKay from vomiting and its accompanying agony so I joy in his peaceful resting. I feel like he is protected and safe back here in the bedroom. We got a hospital bed for him. I moved the king-size bed over 3 feet so he's still sleeping in the same location (and I am still next to him.) I dose him 3 times per day and he appears noticeably more comfortable. He is still yellow - but not as much as he was.
Today, the wonderful person who is his (and James') piano teacher was here visiting and helped Lori wrap some Christmas presents. I had her wrap John McKay's presents. It just seemed the right thing to do. There are so many things that will trigger tears on my part. A couple of days ago, I hurt so much that I seriously wondered how one can hurt so much and still live. I felt as though my insides were going to collapse from pressure. God helps us dramatically rarely but subtly often. At the point of being ready to just stop, the comforter gently touched me - with a tight embrace of a dear friend. And I made it through another day.
We have been keeping an open door policy. John McKay doesn't respond much to anyone or anything but I know he can still hear. Last night, one of the families we have home taught for years came and visited. i was so touched as the mother of the family gently thanked John McKay for his service as a home teacher and kissed him goodbye. Another very special moment happened when 2 families (including his very first piano teacher) came carolling. John McKay has always loved classical music. As they sang in the other room, a tear formed in the corner of his eye. I spoke to him and asked if he was enjoying the music. I called the carolers into the room. As they sang, he lifted his eyebrow and tried to smile and even opened his eyes to see them. That was the most responsive he'd been in a few days. (My tears at that moment were tears of joy.)
Last Saturday (after the previous entry), Aticus told me that they made over $1000 for Primary's. I marvel at the way BHS has become more united because of John McKay. They also inducted him into the National Honor Society. I know that his situation is very difficult for many of his fellow students and I pray for them.
12 Dec 2009
Last night, we had John McKay on some drugs that hospice can provide which allowed him to go the entire night without vomiting. As I type this at about 6:20, he has gone nearly 24 hours without vomiting. He sleeps most of the time now. He is not recognizing people very well. Due to liver damage, he is pretty yellow in color. Today has been the most peaceful day in several. It is better to have him sleep than vomit.
Let me speak of some of John McKay's classmates at BHS. They have organized a fund/supply raising event for Primary Children's Medical Center in John McKay's name. They had a kickoff assembly the day before Thanksgiving Break. John McKay was able to be there to receive a quilt and stand before them. Tonight, I will speak briefly at the beginning of another fundraiser they are doing. I will try to explain that dealing with cancer is mainly boredom interspersed with trauma. To help with both, they have professional "child-life specialists" who see to the emotional needs of the children. The fund-raiser is aimed at providing them with things for the children. It's hard to realize that John McKay won't be dealing with Primary's any more but this fundraiser will be a legacy for him there. I thank those wondeful students who are responsible for this.
7 Dec 2009
We took John McKay to Primary's for possibly his last time today. The Avastin has been called off. His symptoms match those expected from more cancer cells in the spinal fluid as well as brain tumors. The day of medical intervention is over for him. The TPN has been stopped. All he is on is: Saline and Dextrose to help preserve the mental capacities he still enjoys, pain medicine (patch plus we have some other), and Lorazepam (which can help with nausea, pain, anxiety and sleeplessness.) We are trying to keep the highest possible quality we can for him. He has enough fat on him (from the TPN) to provide his needs for over a month. (I base this on the month of November 2007 when he did not eat between his first and second chemo treatments.) He could last days or he could last weeks. His birthday is 5 weeks from yesterday and I personally would not be surprised to see him last that long. I would be surprised (barring Divine intervention) to see him last until Valentine's Day. It is a very hard thing to say "DNR" on your child but it had to be done. It is part of what it means for some to be a parent. There is a special blessing in knowing that you were able to care for your child from cradle to grave. I don't ever have to send John McKay out into the world. I love him and I love Father enough to sanction their reunion in the near future.
As for help, I can't have enough hugs and Lori can't have enough visitors. And focus on James as James - visit with him, offer him an outing, give him Legos. Continue the prayers for Father's will to be done for John McKay. Thanks and our love to you.
5 Dec 2009
I want to start this off positively so I'll mention that on Monday, James received his Patriarchal Blessing (this is a very special, once-in-a-lifetime event for members of the LDS church) accompanied by John McKay, his parents and grandparents. It was the same patriarch who gave John McKay his patriarchal blessing. Also, John McKay chose to attend our ward Christmas Party on Friday. (Although as a matter of course, he didn't eat anything, he did drink a little pop.) He's been too tired to make it to school at all this week. Last Sunday, he and I (also being ill) did make it to Sacrament meeting and we were able to serve side-by-side administering the Sacrament of the Lord's Supper. That is special especially as James also served as a Deacon by passing the Sacrament to the congregation.
The last 18 or so hours have been really bad. Vomit, diarrhea and urine in places both appropriate and not. We're going to put him back on a medicine that helps with the vomiting but has a side effect of keeping him drowsy most of the time. (However, given that last night, he vomited and more at 11 pm, 1 am, 2:15, 4:00, 5:something and 7:30; he managed to be tired all day without the medicine.) We did get him to take a bath today. I disconnected the IV during that. As I write, he is sleeping and moaning. We have a pain patch on him. It has been hard to watch him losing the ability to read. He now has to sound out the words as when he was learning about age 4 or 5. This is hard when I remember that his goal on the reading tests at school was to score level 12.9 (that means month 9 of 12th grade) before he began Junior High. He missed it by a few weeks as he scored 12.9 in October of 7th grade. He has always loved reading and as I see these things go, it is like watching pieces of him die.
That said, I want to emphasize that if I could go back and do it all over again, I would still choose to be the father of John McKay and James. Nothing has brought me greater joy. (Lori has told me that I never truly smiled in pictures until I was a father.) I also want to stand up and let people know that Heavenly Father is a loving God who wants our happiness in the long term. Long term means our entire existence: pre-mortal, mortal and post-mortal lives. The fact that adding a body to our spirit made us forget our pre-mortal life and the understanding that we had there (although this will come back to us after this life) does not alter what was decided and planned there. I can hurt like hell, swear like a sailor and still know that Father loves me and my Savior Jesus Christ's atonement has the capacity to fix everything - including my heart.
Heavenly Father has not revealed to me John McKay's mortal future. My mind goes back and forth as to my opinion of what will happen. (Not that anyone has to guess where my current thoughts lie.) I feel that James and I are as prepared as one can be for either outcome. I feel John McKay is prepared to die - and I can help him through life if he is to live. Please pray for Lori to be prepared for either outcome. Also, please pray for Father's will to happen. Many of you have emotional investments in this saga. I pray for you as you make your peace with Father's will. I truly sorrow for those of you who harbor anger in your hearts. Anger can block the very comfort we need. The best reason to join the Church of Jesus Christ of Latter Day Saints is that all who are baptized receive the gift of the Holy Ghost which is the right to His constant guidance and comfort as we strive to obey Father's bidding. It is only through the Holy Ghost that I am able to face the future and have faith. It is only that strength that allows me even this moment to type this. It is what allows me to honestly smile many times throughout the day. It is what gives me purpose. It is what bring the truth. beauty and intelligence I seek to me. If all this sounds miraculous, it truly is.
Thanks for your continuing prayers in our behalf. Thanks for the huge card that James received in the mail today. I am so glad when he feels loved as James - not just as John McKay's brother. And a special thanks to our darling friend who spent many hours today helping Lori organize her office and with the house and errands. I pray multitudes of blessings from Father upon your head and the heads of all who serve.
28 Nov 2009
Still trying to update you. John McKay & I went to Primary's on Monday for doctor visit and Avastin. He doesn't want another MRI. His reasoning is: there was good news at the last one and 'why mess with success?' So, we'll wait until the start of next year for another scan. John McKay spends most of his time now sleeping. He's still on 24-hour IV food and saline. I read a book about a person who died and spent time in the spirit world before being sent back to his body. Lori read it first and James read it after. Currently, I'm reading a book by 2 hospice nurses talking about the experience of dying. It did bring some comfort (despite the fact that I go through a lot of kleenexes while I read) last night as I realized that John McKay's behaviors don't match the patterns of the dying currently. It's like he's in this waiting mode. He's not getting better and he's not getting worse (although the fact that I've only slept the entire night 3 times in 2 months might argue against that.) He sleeps a lot, vomits a lot and spends a lot of time in the bathroom. But, we get our moments with him. He did come to my parents' to be with us all for Thanksgiving including the pictures. The fact that I held him instead of a 9x12 glossy was part of my Thanksgiving Day prayer. He got to feel the love of extended family. I fear that the next few entries will look very similar but I'll try to keep saying something. To those about to engage in a special project for James, I thank you (with tears welling.)
26 Nov 2009
Happy Thanksgiving to all. It is still my favorite holiday and I am grateful John McKay is with us to celebrate it. My mom asked James to write a poem to share at our Thanksgiving celebration. I was so moved by it that I wanted to share it with you. (Legal disclaimer: I asked James for permission to post this. We have no permission to otherwise publish or disseminate it. People are welcome to come read it here on the website. If you read it to someone, please make sure that they know that James was the author of it.)
Birthdays are for giving,
Valentine's is for love.
Christmas is for celebrating the
birth of Him Above.
But the holiday for eating stuff,
and for thanking everyone,
and for knowing Family History:
Thanksgiving is the one!
This holiday's a special one.
It shows our tender love.
For we can thank each other,
and also Christ Above.
For Jesus was the Sacrifice
that saved us, one and all.
For that, we all show gratitude,
at a Thanksgiving Feast this Fall.
Written 25 Nov 2009
21 Nov 2009
Ditto the last entry. Lori has been keeping a log and he made a record (as far as is recorded) of 10 times in one day. We have now put a patch on with anti-nausea medicine. (The vomiting now even occurs without even the provocation of movement - he can literally just be lying there and have it happen.) Also, last night, we put on a pain medicine patch. He doesn't admit to a lot of pain but he has classified it as higher than a 5 (on a scale of 10) so we felt we'd rather keep it lower than that and not wait until it's way high to address the issue. Last night, I also gave him another medicine used for anti-nausea, anxiety and inability to sleep. With all that, he has basically slept around the clock. (He only got up once to urinate after we were all up for James' piano recital-at which he played beautifully.) I am looking at my precious son even as I type this. He does look very peaceful. And, if you think I find myself making sure that he's still breathing - you're right. It is usually the first thing I check upon awakening in the morning and returning throughout the day. As I write this, I am working with James on a report/project for school so we are typing side by side. James and I provide great strength for each other and are so grateful for each other. We get to walk to school together every other school day and share our hearts. It has been hard for both of us to witness the diminished capacities of John McKay. We pray that if he is spared, he will have those capacities returned. Some of my fellow teachers told me that had seen him in the hallway as Lori took him to class. He was carrying his ubiquitous vomit bin. What they felt was the inspiration of a young man who's not quitting. He still usually takes his turn at family prayer. His prayers have more words of thanks than of pleading. He thanks Father for our good ward and friends - for those who reach out to us. He thanks Father for the health that we do have. He petitions for what health we do have to continue. He shows no indication of feeling picked on. He has such a difficult time reading that he often just listens as we have family scripture time. He has to sound out the words now when he does read. We still enjoy watching movies and old TV shows together. Our tastes overlap to a great extent so that is an activity I love to share with him. Last night, Lori and I wanted to go to the temple and then frozen custard for our date, but John McKay didn't feel comfortable being alone. So, his Grandma (my mom) came and enjoyed my favorite movie "The Gods Must Be Crazy" with him. (Yes, we brought her frozen custard as well. Since John McKay is not eating, he declined it.) Monday, I'll take him into the hospital for another dose of Avastin and visit with our wonderful doctor.
14 Nov 2009
Vomiting is the story of our lives. John McKay is on TPN (IV feeding) 24 hours a day. He doesn't swallow anything. Oftentimes, the motion of getting up or moving will make him vomit. We don't even think of tumors these days. We just focus on his messed up electrolytes levels (especially the sodium.) But, he is still with us (meaning not just living but mentally) even though his processes are visibly slower. Tonight, I gave him a funny email to read with pictures and I heard him read it and laugh. We're going to watch a video in a few minutes which he was able to choose. I was told by Lori that I sound too chipper and up when I speak of what's happening. John McKay said that he liked my cheery attitude. I am guilty of being a basically incurable optimist (which does not negate my opportunity to have bad minutes, hours and even days and react accordingly) but I prefer that style of living to one that consists mainly of waiting for the next terrible thing. But, to the point, I think Lori is afraid that people won't realize just how hard this is or how severe it is if it's not presented with the right aura. It does seem like it will never end and the most likely end is not pleasant. But, those ends are mortal. I am so grateful that he is only physically ill and not sprirtually ill. I have perfect hope in his eternal future and in my eternal future with him. I do have days when a big focus of my prayer is to stay soft - not to let the devil succeed in his encouragement for me to harden my heart. I generally succeed in treating those thoughts like any evil thought - cast them out and think of James and John McKay. Please pray for James. It is very hard for him to get through this.
James says: Thank you for all the prayers. I really need them. I need them to get through the school day, to be around my family,and even to get up in the mornings. I know you care about me, but sometimes I feel like a message passer and nothing else. I know deep down that you mean well, but I sometimes feel pestered with "How's your brother? Is he all right? How's John Mckay?" and other sayings. Please read the web page. We really love all of you. You are the ones that help us always. Thank you Larisa Humphries for the Rice Krispies and brownies. Thank you all. Pray for my mom. She is facing difficulties through all this. Talk to her if you get the chance. Thanks again.
8 Nov 2009
I am guilty of writing this entry more out of duty than out of love. If not for the fact of low sodium counts and around the clock IV feeding, one might think John McKay had the flu. During the night, if he gets up and goes to the bathroom, he usually returns, sits on the bed and vomits. He doesn't want to disturb me but I usually get up to offer what help I can. While I'm at school, Lori takes over. She has even changed the batteries and restarted the pump while getting directions over the phone. Every 8 hours, he gets an injection (via his PICC) of Ranitidine/Zantac. This has gotten him to the point where he no longer cries out in pain when he vomits. We're grateful for that. Grandpa Jim's visit was very nice. We went to Temple Square on Monday for Family Home Evening. We got a wheelchair for John McKay. He still tries to attend Seminary and History regularly. (Both of those teachers have also visited him here at home - as has his English Teacher.) On Thursday, we took him to school for his SEOP conference - which is a meeting with his counselor (another very special caring, loving person) regarding his future. It's good to talk about those things. Unfortunately, he is experiencing mental lapses. We hope this is due to the fluctuating sodium levels. It is unnerving to see such a highly intelligent, quick-witted person suffer this way. (I think of the book "Flowers for Algernon" and mourn when I sense John McKay's own awareness of his mental state.) John McKay's good friend has asked him to ordain him a Priest in the Aaronic Priesthood. We hope this will happen Sunday. Monday, I will take John McKay back to Primary's to meet with his doctor and have another dose of Avastin. Now, we plan to set up the Lionel model train set. John McKay smiled broadly when James and I suggested that. The model train holds many happy memories for the men of this family (and for Lori as she watches us interacting with it.)
1 Nov 2009
Happy All Saints Day and what we speak of at our house as the beginning of Holiday Season. My very favorite holiday of the year is Thanksgiving - a day devoted to gratitude and family togetherness without pressure. I'll put up the holiday lights pretty soon. I like light. I love awakening to the glow of colored lights just outside the window. It starts the day on a positive comforting note as I think of all the lights in our lives - the greatest of which is the light of our Savior. But, to the heart of the entry: (I am writing in the morning and) John McKay is in the hospital and should come home this afternoon. He had been vomiting so much we brought him in. The acid has burned his esophagus so badly that it is all he can do to swallow 2 pills every 6 hours. He doesn't speak to speak of. (No pun intended.) It just hurts too much. Thursday, we went to the audiologist who determined there was fluid behind his eardrums so that is a possible culprit as a cause since he tended to vomit just after shifting positions. The fluid diminished his hearing (already damaged) so much at times that we took him in. (Actually we had had an appointment to get his hearing aids adjusted last week but he was in the hospital. Stacey is another special person and she worked him right in on Thursday to check on it.) Since the cause of the vomiting wasn't obvious, he went through many tests (including from midnight to 3 a.m. the night before last) which have come up negative. Since he's not been able to keep food down (or now, even eat) for so long, his body has begun to cannibalize itself. As a result, they have restarted TPN - which is intravenous feeding. When he returns home, he'll be having fluids (saline and TPN and meds) pumped into him almost continuously as they try to give his esophagus a change to heal and get his body chemistry back in balance. One medicine he received for nausea reacted badly and he kind of left us for awhile going into a semi-catatonic phase. It took two people to hold him up for his X-rays. Fortunately, nurse Megan identified that quickly as a reaction to the drug. The half-life of it was 7 hours so the 3 half-lives for it to dissipate to trace levels took 28 hours. As it left his body, I was able to observe him return to us (except for choosing not to speak as mentioned above.) Despite my acceptance of the idea of him leaving us one day and not returning, it is not an experience I eagerly seek or await and so I experience great satisfaction and happiness in watching him return to us.
28 Oct 2009
Last evening while I was at the library, I found out that the line of people there was waiting to see Eoin Colfer - the author of the Artemis Fowl books. I enquired and there was some space left so I got John McKay and James there for his lecture and book signing. The Artemis Fowl books were ones that got John McKay reading again. So, needless to say, this was a very happy experience for both of them.
We're still playing sodium balancing games. Putting 3 grams per day of salt into John McKay's stomach has not worked very well. He doesn't feel like he has room for other stuff such as food and not much seems appetizing. So, we tried switching him to IV sodium. Yesterday, it worked great. Today, he's vomited a couple of times (which can be caused by sodium deficiency) and he has some headache. The count was lower and so they sent out higher concentration sodium which he's on as we write. It's fascinating that the tumors themselves don't seem to directly cause any symptoms (since the first big one). It was the chemo that gave him so much to deal with and now it's swelling/sodium wasting that's doing it. We still recognize the miracle of the smaller tumors and almost don't want to mention the sodium problems - it almost seems ungrateful. So, I'm trying to be as emotionless as possible as I report this. We really want to get the levels back up here at home and not have to take him into the hospital. 2 grandpas will arrive from California on Saturday so he is looking forward to that.
23 Oct 2009
Although I find myself feeling tired and overrun, I need to get this word out as quickly as possible. Were I being a good storyteller, I'd slowly build to the climax and make you dig through detail and plot developments first. But the essence of what you need to know is that the MRI today took an unexpected turn: it showed the tumors are shrinking. This we ascribe to the intervention of Heavenly Father and nothing else.
Let me speak now of Avastin. John McKay has now had 3 doses (his 3rd was today.) The hope for this drug was that it would stop the growth of the tumors. Shrinkage is not typical for it. This medicine is rather expensive and not yet FDA approved for minors - just adults. We told them to go ahead with the first dose knowing that the money I had saved for a project I did not get to this summer would pay for it. We were figuring for the second dose when a very special family in the community who was aware of us found out the cost of a dose. The next day, their son handed me a check for that amount after school. (May they be blessed forever for their gift - it was as close to the gift of life as you can get in this circumstance.) This paved the way for the second dose. He received it and then was tired, tired, tired. We scheduled the 3rd dose and the followup MRI still seeking the help of the Compassionate Care program. This week, Genentech, the company who had the foresight and the resources to develop this drug, approved our request and will provide the drug free of charge to John McKay. Again, we praise the company. You may say they do it for money - but I teach school for money as well. I believe many in that company are motivated by a higher cause and I pray for their continued success.
That said, I do NOT give Avastin the credit for what God did. He may be using the Avastin to further His ends but these effects are beyond Avastin alone. Father asks us to do all we can and all that He asks us and that included trying Avastin. He is showing forth His might and power. There is no good medical reason those tumors should be smaller. This needs to be understood. People can spend a lifetime coming up with alternate explanations but it won't change the reality of Divine Intervention. Heavenly Father won't stop anyone from trying as He won't force anyone to do anything. In fact, in all things He will never make it (His intervention) the only seemingly reasonable explanation because that would make it so there would be no choice and without choice, there can be no faith for our faith is used when we make a choice.
As for his medical future, Avastin is typically given every 2 weeks. The next MRI is not yet scheduled. We will monitor his sodium levels. He'll eat and do what he feels like. We hope this is a great turn in the road and we will look for signs that this is continuing. My emotions have gone to many extremes this week - as have many of yours. We pray for those who love John McKay even as you pray for us.
22 Oct 2009
I just returned from the hospital. Since Saturday, John McKay has not been able to keep any food (or pills to speak of) down. He was even vomiting when there was nothing to disgorge. Finally on Tuesday night, I gave him fluids all night and an anti-emetic (nausea drug). He reacted to one medicine and had a very bad night. I spoke with him after the 4:30 a.m. vomiting and said goodbye. The best explanation we had was that the tumors were causing the vomiting. Everything else seemed the same. A few hours later at the next vomiting, we noticed that he was being unresponsive. (I had already left a message for the doctor to phone us about the situation.) We phoned the doctor again and she said to bring him in. As I cradled him in the back seat, I felt I was taking him into the hospital to die. I had focused while I wrote in my journal about 5 a.m. on the idea of my holding him back. The place of guilt was that, if it were up to me, I would make the choice to have him still here for our entire (Kunz) family portrait at Thanksgiving (and that would also ensure he could go on his date Saturday and to the Court of Honor Sunday at which he'll receive his first Eagle Palm.) So, I prayed to yield my will to Father's (not meaning that I wouldn't be happy if that were His will) and not do anything to impede John McKay's eternal progression in any way.
As we drove in, I was glad for our 4:30 talk as we spoke of his future in the Spirit World. But, it still hurts - and don't ever let anyone tell you differently. The only way not to hurt is not to love - and I truly believe that to be beyond me.
So, imagine my joy when we found out that his sodium was low - in fact a new record. Someone knew on Monday but not us, our home nurse or our doctor. (I choose not to be angry or seek to "take care of it." I just pray that I am learning the needful lessons from how it turned out.) Low sodium is fixable even if it requires him to be in PICU (Pediatric Intensive Care Unit.) Once again, the 3% saline solution was administered and once again he came back to us. Today, he is aware and 85% back. He is still losing words and having trouble with some compound ideas. But, we joked together. I love my relationship with him and love that it will be eternal. I feel the same way about James. Even in our extremity, fatherhood is the greatest source of joy in my life and I wouldn't go back and change it if I could. But, today my most experienced emotion is joy - for when I took him in, it was to die and now, we get to bring him home. He has an MRI tomorrow (Friday) and hopeful release.
18 Oct 2009
Nothing big to report but I wanted to update for the sake of you who are actively looking for what's happening. John McKay has been mainly tired this week. He loves his History and Seminary class at school so he goes to a class a day. He likes other classes but this week tiredness has kept him out. He has good and bad times as far as being keen of mind. The other day as voice in family prayer, he asked Father to heal him - but "Thy will be done." Our faith remains undimmed. The Spirit of the Lord continues to rest upon us and comfort us. John McKay has said several times "It is inevitable that I will die unless Heavenly Father heals me." One time was as Lori realized that we had discussed his funeral. We don't have it all planned but are talking about some specifics of it. John McKay and I have spoken of the emotions about living and about dying. There is not much fear. I cry far more than he does. This morning, James and I had a very long talk about the resurrection. I feel so sad for those who face their own death or the death of a loved without the knowledge of the resurrection. To those of you reading this and finding it a little incomprehensible, let me say that even as God, our Heavenly Father, created these mortal bodies for us, he will create an immortal body for us after our death. When our spirit is united with this immortal body, we will never again suffer the pains of death. This knowledge, borne to me by the Spirit as He will bear it to all who seek with real intent, is what enables me to face our circumstance without turning to despair. I probably should state that for the last few entries, I have posted without John McKay's prior clearance. But, if he reads and desires changes, I will change them for him.
7 Oct 2009
I wanted to share some of the last 2 days with you. John McKay was very excited as he came into my room at lunch yesterday and announced "I'm so happy. My brain turned on today. I was able to answer questions and ask questions and interact with my teacher!" Later his wonderful, special history teacher told me that he stayed after class 20 minutes into lunch just visiting with her - very much to her enjoyment. Monday, his Seminary teacher told me roughly the same - that he was really participating in class actively asking and answering questions. I personally am so happy that they can see the "real" John McKay. By real, I mean when he is operating without the effects of the cancer or its treatments showing. He is not currently suffering pain. Brain tumors vary in the amount of pain they cause and these have spared him so far. I pray he will continued to be spared serious physical pain. (He does have the occasional headache or other pain but it is highly manageable with acetaminophen.) I hope this entry does your hearts as much good as it does mine to share it.
1 Oct 2009
As I write this, I hear the laughter and banter of over a dozen teenagers as they are here playing games with John McKay. So wonderful. Please don't hesitate to do something like this. Today, John McKay and I had one of those talks that fathers sometimes have to have with their precious children. He is feeling at peace about living and about dying. We both recognize that Divine intervention can occur and preserve his life - but that in the absence of such intervention, he will die of this. (Lori is focusing as much as possible on the hope for the Divine intervention.) Peace is a gift of the spirit. I have thought of late how sorry I feel for people who suffer not only sadness but also carry a load of anger and bitterness on top of it. I am still teaching John McKay things. That never ends. Thanks to the dear friend who bought James his own pie. (He did choose to share it with the family.) Lori is being very well watched out for by her sisters. John McKay has attended some of his school classes. The nightly (12 hours each night) hydration through his PICC line has been keeping his sodium levels good. To all appearances right now, he is just fine. We like that look and sense. We hope that you will not assume he is worse off than he is. We fear that some people are trying to avoid tiring him when he is not tired. If you feel inspired to interact with him, please do. (If there is an issue, we will tell you.)
28 Sep 2009
A little tribute to our Ward (Bountiful 36th): This page had its genesis in the updates we would put in the Sunday meeting program each week for our ward. (For those of you unfamiliar with the term ward, it is the LDS church name for a local congregation.) At a certain point, our bishop (the leader of our ward) counseled us to put this information on the web. So, we took the updates still on the computer and used them to begin this page. One of the things John McKay says most often when he is voice for family prayer is to thank Heavenly Father for our ward and those people in it who are like extended family. They were our first non-blood related circle to feel the pain of the cancer and all that it entailed. And they rushed to our aid. I'm not sure why I write "They" instead of "You" as so many of you readers of this are members (current or past) of the ward. It gives such comfort to us to know that a call for help falls on listening ears. Beyond the calls, we have received such outpourings of love and service. Like the day I came home from the hospital with John McKay to see 2 of my brethren cleaning the leaves out of our raingutters. Or the day I had planned to clean the stove and mentioned it to a sister who did it for us. I could take up a couple of screens with specifics. I think of the words of Christ which say "Inasmuch as ye have done it unto one of these, ye have done it unto me." You have taken upon you the name of Christ by baptism and temple covenants and manifested it in your Christian walk as you give your love, service and support to us. We recognize that many of you are suffering great pain at the prospect of losing your friend and brother John McKay and we pray for you. I remember the day I explained about John McKay's situation when round 2 started. After giving me time at the podium to explain, Bishop Humphries stood and invited the ward to join him in his fast for John McKay and our family. In that moment, the Spirit told me that our experience was being co-opted (my word) for the good of the ward. Then President Hanks (of the Bountiful South Stake - a stake being a group of wards) spread it to the stake. And with this page, it spread to the world. But it began in the ward. I know that we were led to this ward to be in your hearts as you are in ours.
A thank you for prayers: To be the recipient of the prayers of many is a powerful feeling that can only be understood by those who have been there. The other day, a chaplain came to our hospital room and, after some visiting, ask to pray for us. My reply was "I never turn down a prayer." Heavenly Father hears and counts every sincere prayer. He does not grant every petition but he answers each prayer. I want each of you praying for us to know that we are supported and strengthened by those prays. They are NOT a small thing. Some of you don't even know us - you know someone who does - and yet you exercise your faith on our behalf. Even if we never meet until at the throne of God, I want you to know of our heartfelt thanks to you.
25 Sep 2009
Grab yourself a Kleenex and a seat before you read this. (I wonder how many trusted me enough to do those 2 simple things.) I'd rather be seated holding an unused tissue and feel like "I didnÕt really need to sit for this" than collapse crying. At this moment, I am writing without shedding tears but at any second, something totally unobvious can set my waterworks going. The heart of it: Yesterday afternoon, the doctor said that John McKay has "weeks" to live. When John McKay was lucid enough to comprehend (about the fifth time I tried to explain it to him,) his reply was "That's ridiculous." We made a deal that I would tell people both perspectives. James reaction was to laugh. Quite frankly, I'm o.k. with their perspective and will not complain if John McKay is given several more decades of quality life. The MRI he had on Wednesday showed that the cancer has gone crazy (my term - not the radiologist's.) The previous tumors have grown and there are new tumors. They figure that the tumors are hitting/putting pressure on various areas of the brain and causing his sodium levels to be weird as well as directly affecting some functions. He has periods of being lucid interspersed with periods of confusion and periods of tiredness.
The one medical intervention left to us at this point is Avastin. This is the drug that slows the formation of new blood vessels and thus inhibits tumors which use a lot of blood for their food supply. Of course, the insurance company states that it is not FDA approved for under 18 (see the Temodar discussion of the past.) So, the wonderful people here at PCMC are pursuing other avenues to obtain it. The studies Dr. Bruggers is quoting in her appeals show that about 1/3 of the people had success with it. Success meaning that it stopped or shrank the tumors. The long term hope would be to control them until a new method (procedure or drug) could be developed to stop them. This is a particularly mean cancer which has shown resistance to both radiation and current chemotherapies.
We hope that by the time you read this, John McKay will be at home. They want him to be home rather than in the hospital as much as possible. I'll probably be giving him IV fluids with sodium to maintain those levels and whatever other medicines are deemed appropriate. Right now, he is not in any more pain than the average person. And he may not ever be in much pain. We just don't know.
Visiting: John McKay has lucid and less-than-lucid times. So, be prepared for that. When lucid, he enjoys people. To him, talk about whatever. You can talk about cancer but don't focus on dying. Making him laugh or feel good is the best gift. James is very lucid as those of you acquainted with him well know. He is happy to interact with people and enjoys the attention and affection. Lori can use all the loving kindness and visits you can give. She knows the gospel plan and has great faith in Heavenly Father and in the atonement of Jesus but this still hurts and she needs the salve that can only be provided by loving friends and angels in mortal garb. (Okay, now my tears are starting again. I know of the great love that has been showered upon us and my heart is full of gratitude.) Let Lori guide the conversation according to her needs of the moment. It is o.k. to take any of us out for a treat or a walk or a quick excursion. We all can use hugs.
Pain: This hurts. When a baby or toddler manages to push a bookend off a table and it lands on your foot, it hurts - but it's really nobody's fault. Nonetheless, you find yourself in pain. Well, (G-rated version) Megastuff Happens. We don't need to know why and dwelling on that cannot help the pain. But, the atonement of Jesus Christ can. What it does for us is to fix the pain we cannot deal with. But it does not remove all the pain. Since the pain is unavoidable, it's o.k. to acknowledge it and please realize that we must go through it. When we cry, we cry. When we laugh, we laugh. Join us. Undoubtedly, many of you also have pain. Our minds can say "If life were fair, it wouldnÕt be fair" and "It will all work out" which are both true and good long range things. But our hearts are part of the immediacy and act on a different level. Which is great because that is also the level of love. So, there is no real contradiction to testifying of the love of a kind God through copious tears of sorrow.
22 Sep 2009
On the good side, John McKay went to the Homecoming Dance with a lovely girl and a nice group on 12 Sep. It was a positive experience. On the sad but expected side, his Great Grandmother passed away. (He is the oldest child of the oldest child of the oldest child of hers.) We drove out to California (12 hours) on Thursday, participated in the funeral services on Friday and drove home on Saturday. He did vomit up breakfast but seemed o.k. He even drove for about 25 miles in Nevada until we passed some garlic fields and he felt the urge to vomit again which he didn't want to do behind the wheel. He didn't eat much the rest of the day but we made it home o.k. (sans Lori who stayed behind to help.) After we reported to Lori, he vomited again.
Sunday was his Grandpa Kunz's birthday so we made him birthday dinner. As I was cleaning the potatoes, I didn't know that the sink drain had disconnected so it flooded under the kitchen sink and the floor and ran down into the laundry area of the basement. As we (James, John McKay and I) dealt with the flood, John McKay began to vomit again. James cleaned up flood while I prepared dinner while John McKay vomited. He couldn't even keep pain or anti-nausea pills down. Finally, I gave him some IV medicine. (In the midst of the flood, I discovered that the water softener is also on the blink - but not a huge clean up issue.) By then, we had missed the first part of church. But, James went to church and John McKay wanted to, so we went with vomit bin in hand and John McKay in pajamas. After church, the highlight of the day was Dad/Grandpa's birthday dinner. John McKay ate some cold cereal and jello.
Later on, he began losing the ability to recognize us. That was the moment to utter expletives (me - not him, but I can't remember if I actually uttered or only considered) as I packed. Then off to the hospital. We spent about 3 hours in the ER before they drew blood and found what I had predicted: low sodium. Finally, we ended up admitted. Some very wonderful people volunteered to spend the night with James or have him over to their house for the night. In the end, he chose to be home alone knowing a dear neighbor was sleeping with the phone just an arm's length away. He is such an awesome, mature person. I think most people don't realize just how much this hurts and affects him. I really am glad and grateful when people reach out to him like that. I really wish he could more often be the focus of people's attention. Any of you who have a notion to give him some special attention, act on it.
After some more drama, we got into the room. He spent the rest of the night mainly catatonic except to get up and urinate. He didn't know where he was or how old he was but he know not to urinate in bed so he would get up to do it. That caused him severe pain and he would scream outloud. I would assist him as best I could. We were up about every 45 minutes. They also were pumping mega sodium into him. Finally came the blessed 5 o'clock hour when we actually got to sleep for a couple of hours until normal wake up time. It almost always seems to go that way (i.e. we get that sleep time.) All day long, he stayed catatonic mainly sleeping and being pumped full of sodium His levels did NOT rise consistently but added the dramatic element of rising and falling. Finally, they decided to take him back to the PICU where he is monitored 24 hours a day. Meanwhile, Lori flew home and was picked up and taken home. Since John McKay was watched constantly, I dared come home and go back to school today (I've had a sub for the last 3 school days.) Lori went in this morning and he had recovered enough to recognize her.
As I write, they are ready to move him back to the Cancer unit. They want to find a root cause for the crazy sodium levels. In the morning they plan to do a lumbar puncture/spinal tap to check for irregularities there. John McKay is still losing words and having a hard time communicating.
6 Sep 2009
Some more good news: We got a phone call from our doctor and she said that they have examined the MRI scan from last week and the tumors are no larger. To recognize the magnitude of this, one must realize that he has been on no treatment (chemo, etc.) aimed at the tumors since the 9 Aug trip to PCMC. Since these have been fast growing tumors, this was unexpected. When he got the sore throat a week ago, we suspected it was the same bug affecting James and Lori. Currently, all three are on antibiotics. John McKay has a terrible sounding cough but the home nurse listened to his lungs and they still sound clear. She has been here daily to check his blood sodium levels - which are remaining up where they should be. With the tumors not growing, there is not the same sense of urgency to try more treatment. This is good as the insurance company denied the Avastin - the drug used to slow the formation of new blood vessels which feed tumors. It's the same story as the Temodar denial. Our doctor is working on other avenues to get it. He is supposed to get the sutures out of his head in the next couple of days. They are located right at the front of his scalp so the doctors shaved an area about 2 inches square for the procedure. But he takes it all in good stride.
1 Sep 2009
I just brought John McKay home a few minutes ago. They moved him out of the PICU this morning after a CT scan. Later they did another MRI to check on the tumors. They removed the drain they put into his brain. His sodium levels are o.k. but they are going to check them daily for the rest of the week. He seems a little unsteady on his feet but definitely happy to be back home. (I got videotape of him playing with the drill they used on his skull. He has an ability to face stuff.)
31 Aug 2009
Right up front I can say that this entry ends more happily tonight than it would have last night. Friday, John McKay began having a sore throat. Saturday, it was a lot worse and I told him he was excused from any yard work that day. (He still began the mowing. Lori finished it up. She said it was fun to drive the riding mower.) He didn't eat much as the day progressed. For the evening, we watched "Support Your Local Sheriff" as a family and he laughed out loud. He ate a little ice cream but nothing more. By night, I gave him heavy duty pain killers and he slept upstairs. But not for long. I don't think I slept longer than 45 minutes in a row as he vomited repeatedly during the night. He still interacted at the 3:30 vomit but afterward didn't seem to react. I was so tired that I didn't really notice it. When Lori came in about 8:30, we recognized that he was unreceptive. He did not speak or respond to commands. He did not recognize us. He didn't want to move or be moved. His eyes still looked around - but vacantly. And he started waving/pushing us away. The phone call to the doctor was perfunctory. We went to Emergency. This time, we had people who knew us from 3 weeks ago and it turned into an experience that went well. After a couple of hours, we were moved up to PICU (Pediatric Intensive Care Unit) which we were already familiar with. The things they focused on as possibilities were: a) fluid pressure on the brain due to a malfunctioning shunt; b) low sodium levels; c) swelling of the brain; and d) infection.
They did a tap of his shunt to get fluid out. (That consists of putting a needle through his scalp and through the hole in his skull where the shunt is to reach the fluid level and then attaching a syringe and sucking with it. This produced very little fluid and made them think it was the issue. Since his sodium level was only 126 and then 125 when it should be between 135 and 145, they put him on the 3% sodium (as opposed to the typical .45% sodium saline solution normally given.) He had not had a fever at home but developed one there so they put him on a wide range of antibiotics. They also gave him a megadose of steroids to reduce brain swelling.
The worst moment came when he was so agitated during this that he began to try to tear out the IV and other tubing. It got so bad, we had to use restraints. He is such an obedient child when he's himself but he was beginning to hurt himself. (He actually ruined one IV.) So, I had to literally help tie him down. That was my biggest tear moment as we took away even his freedom to move. After more discussion, they decided to put a drain into his left brain ventricle since it's larger than the right one where his shunt is. If that drained a lot of fluid, then they would convert it to a shunt in OR later this week after the infection was taken care of. I stayed in the PICU while they prepped him and then I left as they gave him sedation. (Doctors requested it and it was also the time when they kick all family and friends out during shift change.) They then cut back his scalp and the muscles, took a hand drill and drilled a hole through his skull. Then they inserted a tube through his brain into the ventricle. And very little fluid came out. They'll pull the drain out in a couple of days and the scalp will heal but the hole will always be there. Rule out the shunt. This is where it ends Sunday night.
Except for the blessing Bishop Humphries pronounced upon him through the power of the Priesthood promising him that he would again speak to his family. Then we left the hospital.
And now, as promised above, this morning, his sodium levels made it back into normal range. He visited with the nurse. He recognized Lori when she came in after the blackout hour. (From 7 to 8 both in the morning and the evening during shift change, all non-medical people and non-patients are kicked out.) He ate food and spoke and watched Discovery Channel or History Channel or Animal Planet. (We don't have cable TV at home so the hospital is where he gets to watch those channels.) I spoke to him on the phone. I visited him. He's still in PICU for tonight and they're talking of moving him the ICS (the cancer unit where he usually stays) soon.
12 Aug 2009
We waited a couple of days for this update to give us a little time for some emotional leveling. As mentioned last time, the 25 mg. dose level of Temodar is not working. And the full level dose trashed his blood counts. So, that option is being rejected for now. The new option is for a pair of drugs: a nasty (meaning all the standard chemo side effects) chemo along with a drug designed to retard formation of new blood vessels. The idea of this is to hit the tumors with the one and deprive them of their nutrients supply with the other. The drugs would be administered every 2 weeks as an outpatient at the hospital. (It's basically an all-day ordeal for the timing of it.) The doctor is direct that she does not see this as a cure. None of the treatments that now exist are considered the cure. The idea is to "control" the tumors and buy more time while the cure is discovered/developed. Along with this, she's weighing very heavily quality of life issues. Before, we faced hell for 9 months knowing that there was an end that was almost always successful. So, we did it. Now the situation is different as there is not a visible light at the end of the tunnel. That's why she's choosing very carefully her recommendations. I use that word (as many words) very purposefully. Both the doctor and the parents are making it clear to John McKay that the decisions must be his. We must support and aid all we can. He told me yesterday: "Don't tell me I have a choice because I have to do it." That is his faith and trust in the guidance of the spirit speaking. And that trumps us all. We don't have to understand the whys in order to do the whats. Without our understanding of this life provided by the gospel, we would be totally beaten by this situation. Even with it, it is very difficult.
The other part of the problem is the stroke/seizure-like symptoms. He is also on steroids and anti-seizure medication. I think those symptoms are more scary. They come on so unexpectedly and make the caregivers feel as powerless as the victim. The feeling is that the tumors are not the cause of these episodes but they are not 100% certain that it is a function of the swelling.
John McKay had his school picture taken today. He plans to attend as much as he reasonably can. He wants to keep living life. His Great-grandmother is on her deathbed. He got to see her last June. We'll probably take a trip to California in the near future for her funeral. He is the great-grandchild who has spent the most time with them so he is feeling very tender about this. He also feels frustrated because he feels he's not doing much. I think the root is that he reads and writes so slowly that it takes him many times longer to do things so a list of what he's done doesn't seem very long. But, he has been told in a blessing that he's doing Heavenly Father's to-do list for him.
9 Aug 2009
The nice thing about this entry is that I'm writing it at home. Last night, John McKay began to lose words (in his mind.) This morning when he reported a headache, I (with his permission) phoned the oncology doctor on call. By the time we arrived at the ER, his right hand was going numb and his face was beginning to droop. All this is the exact pattern of his previous episodes. The next step is temporary shutting down of short term memory. Since it was the ER, they followed protocol and did a CT scan first to be certain it was not a stroke. Then, he was cleared for his MRI. Today's replaced the one scheduled for Wednesday. When he came out of the MRI, I saw a miracle: instead of him being worse as I expected, he could smile fully (our test for the facial paralysis), his hand was no longer numb, he could spell the word he lost this morning and his headache was nearly gone. In fact, so astounding was it that they didn't even make him stay for the night. (Even the scan didn't show increased swelling.)
The scan also showed the tumors. We (JMK and I) looked at them and saw that the active ones have grown slightly. So, it seems that 25 mg of Temodar daily is not holding the line. We'll meet again with the doctor this week to discuss our next step on that count.
Although tumors are dramatic, they seem to take a second place to brain swelling. Most of us live with a certain sense (in the very back of our minds) of 'we could die today' but it has such a low probability that it should not occupy our attentions (except to help us live so we could be satisfied with how we spent our last day on earth.) For us, we live in a world wherein this is not an extreme idea: we know how it could occur and why. I would not be forthright if I did not say it was wearing on us. But, what's more important is how we deal with it. We have a choice in the matter. To feel the pain or not to feel the pain is NOT our choice. It is there. To dwell upon or not to dwell upon it is our choice. If we let it become the most important thing in our lives and the center of our focus, then we deny ourselves growth and Heavenly Father an opportunity to bless us. There will be no cancer in the next life but there will still be love, fortitude, compassion, kindness, gentleness, service, kind words, and such.
2 Aug 2009
Last night, John McKay was able to use his Priesthood and baptize his cousin. It was such a wonderful moment to witness his growth in the gospel and his service. As I also baptized one of the triplets, it was a special moment for my parents to watch their son and grandson perform back-to-back baptisms. This is an event John McKay has been looking forward to for a long time.
His main activities these days are studying the scriptures and writing in his journal. He is seeking to be close to his Father in Heaven. He still uses his riding mower to mow our lawn and he mowed the neighbor's lawn (with James' help) after the neighbor had heart surgery. On the good side, he is off the steroid and recovering from some of the side effects. On the not-as-good side, he is tiring a lot more of late due to side effects of the oral chemotherapy. His blood counts are going down. We'll talk about a transfusion this week. His next MRI is scheduled for Weds, 12 Aug. Although as usual, it will show both the state of the swelling and the progress/regress of the tumors, our primary focus is on the tumors and how well the Temodar is working.
With some of the concrete left over from pouring our ramp, John McKay and James made a headstone for Princess. They also put their handprints in the bottom of the ramp.
15 Jul 2009
Those of you who have never loved and been loved by an animal may have to take parts of this entry on faith, but those who have will understand the emotions of John McKay (and the rest of us) at the death of our cat Princess. We got her at the end of May, 1998. She was the kitten of the litter who came right over to John McKay and sat in his lap. (James was not quite 2 at the time and doesn't quite remember the day. For him, there are no memories of his life without Princess.) John McKay carried her home in the car and she spent a lot of the next 11 years cuddled up next to him. She mothered Giovanni who we kept and he lived with us about 5 years before dying. Princess seemed to miss her boy when he was in the hospital and would greet him upon his return. She died this morning. We phoned our sons at the cabin and let them know. This afternoon, after their return, we said our good-byes to her. One of the huge differences between humans and animals is that humans spend most of their lives knowing that they (and all other living things) will die. But, even knowing that, we still choose to make other living creatures a part of our lives. To take the sting out of death is to take the love out of life. (So said my uncle.) And as great as the sting is, the love was still greater. And the memory of that love will remain all during our lives.
11 Jul 2009
A couple of good weeks. We went to Grandpa and Grandma's cabin on the old family farm as is our annual tradition. While there, John McKay pondered and questioned continuing the battle. The answer came through the Spirit to keep on fighting. Since then, he has redoubled his efforts. The biggest highlight came yesterday as I looked out the window and saw him get onto his bicycle. When he started on the electric scooter with a seat, we repeated his learning to ride a bike; but this was totally on his own. By the evening, per his request, we all 4 as a family rode our bikes around the parking lot of the local church house for about 20 minutes. His cheeks were red but the look on his face was one of pure joy. He has also begun joining me in my Timed-Ex (floor exercises I first did as a missionary in the MTC) and has resumed doing his stretches given him months ago by the physical therapist. He continues to spend a great amount of time reading his scriptures and writing in his journal. He is slowly weaning from the steroid and those side effects are lessening. We see basically no more symptoms of the brain swelling. He is playing/practicing the piano almost daily. This month, each Sunday he (along with James) is helping out for church meetings at Heritage Place (a local retirement home/care center.) Next week, he'll spend several days with his scout age cousins and grandparents at the cabin. James learned how to flush the PICC line as I'll not be there. John McKay has blood drawn weekly (using the PICC line) and is to have another MRI in August. He is still on the Temodar daily. Again today, I saw both sons just go and mow the lawn (John McKay on his riding mower and James pushing the power mower.) Being a father is the greatest and I pray for both my sons to marry the right young women and experience fatherhood themselves.
27 Jun 2009
I've considered updating during the week but my natural inclination is not to weigh people down with anything more negative than I have to. Today, things seem much better but the brain damage (which we hope will only be temporary) has been apparent most of this week. On Monday, John McKay asked what day it was more than 10 times. He has had trouble finding words but the biggest thing has been the loss of short-term memory. He remembers being in Livermore the night before we left but then he has lost several days. The absolute saddest moment for me this week was the look of agony/horror on his face as he remembered that he has cancer. It just about did me in - and him, too. He is on an extremely high dose of steroids and has been suffering from (apparently common but not to him before this) side effects of being highly emotional and easily upset. They have changed his brain chemistry enough that he has acted and felt depressed. This is new and we pray and fervently wish it to go away as he is weaned from the steroids. He feels he's just wasting time. (Which hasn't stopped him from doing his Home Teaching, reading scriptures and other books and mowing the lawn.) One neat thing about his memory loss is the fact that he doesn't remember serving in church last Sunday or the decision to do so. It's just a part of him. He is now tapering off the steroid (we're down to half the dose he came home from the hospital on) and he seems back to us. Watching a loved one lose their mental capacity is like watching them die because the person you know and love is going away. By the same token, watching them recover is like a little preview of the resurrection. It gives me just a tiny foretaste of the joy that awaits us on the morning of the resurrection when we will arise in bodies that will never again decay or suffer from illness or pain. My mind has had a conception of the resurrection but now my emotions are beginning to conceive.
P.S. He's back with us enough to ask him for his approval of the postings.
21 Jun 2009
I did not expect to update 2 days in a row, but John McKay was released from the hospital this morning. They figure nothing more can be done in the hospital than can be done at home as he is on oral medication and his pain managed. He is still shaky and unable to do much with his right hand but his speech is fairly intelligible and he can walk unaided. If this next bit sounds like I am talking of a heroic type, it is only because I am. When he got home, he went downstairs and changed into his church clothes. Less than an hour after returning from the hospital, he was in church. To us parents, there was another choice (stay home, rest and recover more), but to him, the obvious (and only) choice was that he would be uplifted as well as discharge his duty by attending church. We just returned from 3 hours at church. He attended his classes and then helped administer the sacrament in Sacrament Meeting. I think in my dictionary when I look up the word "valiant" from now on, I'll just see a picture of John McKay.
20 Jun 2009
John McKay got a blood transfusion a week ago to help give him energy as the Temodar was wiping out his red blood cells and mainly just sleeping unable to carry out his plans he's so eagerly made. It worked. He was able to have enough energy to enjoy our trip to northern California to be with Grandpa Jim and Grandma Cherry at her beach house. We also spent a day with Grandpa Pete and Grandma Dorothy (Lori's grandparents with whom she and her mother lived when Lori was very young between her Mom's marriages - which make her more like a child than a grandchild.) It was hard to see them in their physical state but good to take the opportunity.)
Things were fine when we left Livermore but by Reno, John McKay was suffering from severe headache and numbness in right arm and face (which renders him unable to speak.) We gave him medicine we had with us for such an emergency and continued on our way. We had to pull over into the median for an incident. Although the face improved, the headache did not and by the halfway point, I was on the phone to his doctor who prescribed more medicine and a scan. So, we drove the rest of the way, not home, but the Primary's hoping to make it there and not have to go to an intermediate hospital. Fortunately, we made it. So, John McKay and I spend our first night back not at home but in the hospital. Again, they are giving him steroids and pain medication and keeping him in until he turns the corner. When the pain and (brain) swelling can be managed at home, they'll release him. And he's pushing for that.
5 Jun 2009 As I was outside working on our project, I was trying to tune in to the promptings of the Spirit. So, here I sit sweaty and dirty (yes, I did wash my hands) because I feel a need to speak about a topic I've been pondering of late: James.
James and John McKay have had a special relationship extending back to before their births. I have heard of the bond between twins and it seems the relationship I can most liken theirs to. When James' femur was broken, I saw John McKay nearly collapse of the shock of it. When he told James of his tumor, it was James' turn to nearly collapse. The cancer is happening to James as well as to John McKay. We were only given 2 children for this mortal probation (I'll take quality over quantity any day) and they are bound tightly together. I have often stated to people during this that I am the father of 2 (awesome, fantastic, wonderful, joy giving) children - not just one and I have striven to keep a balance. However, I feel called to repentance with this report. James is affected just as much as Lori and me - just in different ways. And he needs the love and support that we do. Perhaps more so as he does not yet have the mortal maturity (although this is one spiritually mature person) and perspective of his parents. So, a plea to you as you seek a way to help us: Think about the suffering brother who is not allowed to do as much as the parents to help. Think of how you might feel at the prospect of "becoming an only child" as he has voiced his fears. We have had many things done for the whole family and we usually let James open them. But, it would be so wonderful for him to have someone focus on him and his suffering. Many of us (especially parents) know the feeling of gladly trading places with a suffering loved one. Part of that is that it is easier to be the suffering one because you know best of all just how severe it is at all times and you feel you can do something. Then think of James as he suffers both for his brother and mourns the loss of the John McKay he once had and feels the unsurety of the future. Feel free to do something just for him. He loves to be thought of and invited to things. He loves to get mail addressed specifically to him. He enjoys being one on one with adults and friends. Just ask him and let him decide. I have felt you reach out so much to us and I thank you. I know of your love and concern and feel it.
2 Jun 2009
The scans were generally positive today. No new tumors. No increase in tumor size, in fact they may have shrunk a little. The perplexing thing is that the swelling seems unchanged. But, as long as he has no symptoms, he can stay off the steroid (which he finished weaning a week ago.) About the time he decided to begin the Temodar, he said "I want to do more with my life than just not die." Of late, he's been doing more and acting more alive. He has always been helpful around the house and yard, but he has redoubled his efforts to "pull his weight." The Temodar is attacking his blood counts enough that they are reducing his dosage but you wouldn't know it to see him be and do. Last night, he again participated with the school orchestra as he played his cello in the final concert of the year. He was able to have his cousin in attendance who enters the MTC tomorrow heading for Paris. Between medication and activity he has been a little more tired of late. Last Friday, we had a party here wherein many of his friends came and played "Killer Bunnies." We as parents receive so much joy as we witness a gathering such as this. He has been helping me with the sprinkler system remodel and retaining wall/deck project. It is again nothing short of pure joy to have your son work beside you in a good cause. Despite a hospital stay, he got his Home Teaching done. He strives to magnify his church and Priesthood duties. The next diversion for him (after we pour retaining walls and footings) is a trip to visit Grandpa and Grandma in California - spending some time at their beach house.
23 May 2009
John McKay writes: Thank you for your prayers. They really really help. Sometimes I feel like I'm living on them. If you haven't read the most recent update, I started my chemo pill Mon. 18 May. We are still taking me off the steroid and I am having no problems at all. I am really enjoying life. I eat what I please, and I do what I please. You can't go wrong with that. I also enjoy blessing the sacrament weekly.
Today (Sat, 23 May) my stake was able to go and plant flowers at Temple Square. It is wonderful to be able to work like that. The weather was great. It's great to be able to do!
21 May 2009
Last Tuesday, John McKay began taking the oral chemotherapy (Temazolamide or Temodar.) He is still tapering off the steroid. It was such a miracle Sunday to see him officiate in his Priesthood as he blessed the Sacrament. One week prior to that, he was unable to speak. He also keeps coming to school. He is reading a lot. Last evening, while Lori and James were at James' concert, he vacuumed the living room after straightening it and the kitchen. Then he came outside and helped me work on the sprinkling system remodel. (I sure love working with him.) At the end of the evening (after holding the flashlight for me as I dug to find one last pipe until 9:40), he felt like he hadn't done much. But, he just keeps going. The other day, he went downstairs to fetch something just "because I can." That's being his main focus. He's making to-do lists and focusing on feeling accomplished. (Obviously, we are all aware his greatest achievement is moving forward in faith.)
He has a PICC (basically a semi-permanent IV) line so we have to flush it every night. They will be doing weekly blood draws now that he has begun the Temodar. The next MRI is scheduled for 2 June. Later in June, we're planning to go to California to visit grandparents.
12 May 2009
This morning, life is much better after the drama of Sunday and Monday. Things went better once we were admitted to the hospital in the ICS unit where John McKay has been most of the times here. He doesn't remember a lot of what happened these last couple of days. Sunday night, we only got to sleep a few minutes at a time until various alarms sounded (about 20-35 minutes of sleep at a shot.) Finally, around 4 a.m., we had them put in a new IV and that allowed us over an hour (maybe nearly 2 hours) of sleep. His speech being gone was probably the hardest thing as he tried to communicate unsuccessfully so many times. But, with the steroids every 6 hours, it began to return some yesterday. Today, it is pretty much back. His headache went away yesterday. His blood showed low sodium levels so they put him on the higher sodium hydration. They want to check sodium levels every 6 hours which requires a blood draw. Rather than become a pin cushion (the IV works fine for putting stuff in but not so well for drawing blood), we decided to put in a PICC line. This is like an IV except that it has a tube that extends inside his vein into his mid chest. It takes a special procedure to insert this. They first tried to do it on his right side where he had had one before and since it was numb, they did it without sedation. It was a painful disaster as (they discovered with an X-ray) the tube hit a spot in the vein and began winding up. After pulling it out, they were able to get sedation (a very low level anesthesia) and insert one into his left arm. Fortunately, he has very little memory of these events. Last night, we expected to be awakened at 12 and 6 for medicines and blood draws. Happy night - that was the reality. Today, we got our son back. He is still having difficulty reading and he loses words but the physical symptoms are basically gone. We got to bring him home in the afternoon.
As for the future: On Wednesday, he needs to go in for a blood draw to check sodium levels (which will likely be good as the levels went up even after they took him off the fluids.) Thursday, we'll visit with his primary physician to talk about tapering off the steroids (which he still will be on midnight, 6 a.m., noon and 6 p.m.) and about when to start the Temodar. The MRI showed 5 more spots that are likely tumors. All the doctors feel that the oral chemotherapy is the way to go on these so we'll discuss when he should start that. The drug is the most effective chemo for brain tumors in adults from what I understand.
For Lori, Mothers' Day began with her son going to the hospital and ended with her grandparents in California both falling and being hospitalized - her grandmother with a broken hip. Grandpa's last fall broke his eyeball/socket and Lori went down to help him get medical help. Her sister-in-law followed a few days later and she has gone there again to help.
I was going to comment on this topic before our events of this week and that is: Priorities. (I gave our last Family Home Evening Lesson using President Uchtdorf's talk about our focus.) I have been blessed in this life to prefer time to money. I have found my greatest joy as a father and have spent much time with my sons. Enough time that one of my biggest regrets is the fact that I encouraged John McKay to take summer P.E. during his last good June. (This is cited to show that my regrets are not large by most standards.) I know my sons as well as love them. I enjoy their company. I love to learn with them. And it is so natural to them to have Dad home when they aren't in school. With this proclivity, I have not realized how many men are busy spending extra hours to buy nicer things for their children or to save for their college educations (which opportunity may never come), etc. So, it is with a certain amount of joy that I have had shared with me a couple of experiences fathers have had since hearing of John McKay's situation and letting it sink into their hearts. On e friend told me that he's quit staying late at work now. He just plain comes home at the end of the workday. Another told me that he felt angered by something his son did and he was about to yell at him when the thought of John McKay came into his mind and stopped him cold. (And yes, I am having a hard time seeing through my tears as I write this.) I am grateful that John McKay's and my suffering in this can save other people from suffering. I hope every parental reader of this will try to let the lessons of our experience sink into his or her heart to allow him or her to make some alteration in their relationships with their children that will lessen any future regrets.
10 May 2009
Here we sit in the hospital room with more drama. Since John McKay's gamma knife/radiosurgery, he's periodically had symptoms that have abated after a couple of hours. We have logged these looking for either a pattern of occurrence or a long duration. Yesterday, around 2 o'clock, he noticed a headache which was accompanied by a palsy on the right side of his face and numbness in his right arm along with loss of peripheral vision on the right side. After a couple of hours, he phoned (from his friend's house) and I fetched him. We tried OTC medicines to no avail. During the night, he got very restless around 2 a.m. and was moving around a lot in pain. So, we tried a prescription pain killer. About 6 a.m., he awakened and went to the toilet to vomit. His agony was enough that he was crying and pounding his fist on the floor. That's when I began phoning doctors. A first thought was shunt failure (his shunt is on voluntary recall.) All 3 agreed to have him come to the ER at PCMC. Once here, the focus shifted to the possibility of a stroke. They gave him quite a neurological examination and then he had an MRI. The MRI did not look like a stroke. It did, however, show marked swelling on the left side of his brain especially in the region of the largest of the tumors zapped on 20 Feb. So, he's been given morphine for his pain and he is sleeping as I write (so I'll post this one without his prior approval.) He has also been started on steroids. They intend to keep him in the hospital to watch him. If the swelling responds well to the steroids, he could be released in a couple of days. If things don't go so smoothly, it could be several. Currently, the palsy makes it almost impossible for him to speak but he can listen to friends and he can feel a handgrasp on his left hand.
2 May 2009
The maxim "No news is good news" seems to apply to this site. We have enjoyed the feeling of sharing good tidings of the past results with our loved ones. We received some more good news: the drug company that produces Temodar has accepted John McKay into their "Compassionate Care" program wherein they will provide the medicine for him free of charge. We had to demonstrate to them that we had made good faith efforts with our insurance company and provide proof on our income while the Primary's staff had to explain the need for it as it applies to this particular case. After the info was sent, the next communication was a letter notifying us of his acceptance into the program. However, at this point in time, there are no tumors to shrink, so he has taken any of it. (Recall that Temodar is an oral chemotherapy drug that has had much success with shrinking tumors.) We do have an appointment with the oncologist at Primary's on Monday - more of a check-in than anything else. (The radiation is handled by a different doctor at Huntsman Cancer Hospital.) The next scan is still scheduled for June and as long as JMK doesn't show symptoms, there is no need for anything sooner.
During this respite, John McKay is living again: as I write, he is playing the piano. On many days, he can walk or otherwise move for his entire PE class period. He has been reading a book about new disease and noting his thoughts. (He borrowed it from a teacher - the same dear teacher who sent him a card and treats upon the receipt of bad news earlier this year.) He is so happy with the Young Men's President at church and feels a part of the program. This morning, he and James went and helped out with the flag fundraiser. (I love to see my sons working together.) He continues in his Priesthood duties including his home teaching and taking the sacrament to shut-ins. He has used the treehouse some (more if not for the rain) and been on the tramp. We spent yesterday at the Family History Library doing genealogy work for a Father and Son day. (For me, it was so nice to use a day of Personal Leave and be with John McKay in a non-medically related setting.) He chose our activity. I love to see him developing his talents and being proactive.
12 Apr 2009
It's Easter Sunday - the day we celebrate Christ's final victory over all the sufferings and death of this mortal life. We know that all will die as it is part of the eternal plan of happiness. But, we who are left behind still class it as a trial and suffering for us (to one degree or another.) So, although we glory in the fact that we will all be resurrected with cancer-free bodies, we today joy in the fact that John McKay is still with us and has no tumors that have not been radiated. His surgery on 3 April focused on the remaining 2 tumors. (They focused radiation on 4 tumors last time and two other nearby tumors also received enough radiation that they got zapped. The decrease in size of those was immediately obvious and as they looked more closely at the MRI and planned the surgery, they determined that there were only two observable, growing tumors.) He has shown no symptoms as he did last time. It is such a joyful feeling to have the doctors express excitement over how well the first radiation surgery worked. Their hope is that it will be a long time before any more of the cancer cells develop into tumors. They feel confident enough that John McKay will not have another scan until the start of June. If the cancer cells will remain at bay until he turns 18, then the insurance company will no longer have the excuse to reject the Temodar on the basis that he is still a minor. Better still would be if his body has been empowered to recognize those cells as evil and destroy them. Meanwhile, we are enjoying this reprieve. Last week was no school. On Friday, we built a treehouse. Once John McKay got on the platform, he stayed there for the rest of the construction. Both he and James used the bowsaw to cut off limbs (of the tree - not each other) and the pneumatic nailer. At one point, John McKay started climbing in the tree. Those flashes of life's return are flashes of pure joy.
3 Apr 2009
I think we feel now the sense of relief an innocent person on trial feels when the jury returns a verdict of "Not Guilty." We just returned from the latest MRI scans and they show that not only the 4 targeted tumors are shrinking but also a couple of others that were nearby and received only incidental radiation are shrinking. One of the tumors that was targeted cannot be seen on today's scan. With this encouragement, they are formulating the plan and we will return to the Huntsman Hospital today for radiation surgery on the other tumors. The ones left are small enough that the doctors feel o.k. to do more than 4 at once. At first look, it seems there are 5 more to be treated. They are studying the scans and preparing the plan even as I write. With tumors this small, the chances of any side effects are much smaller than last time as well.
Last evening, John McKay returned from his San Diego trip which was enjoyable and refreshing to him. He is smiling. A week ago, he enjoyed himself very much at a party some dear friends organized for him. Thank you for reading this site and taking such initiative.
As I have prayed the last few weeks, I have pondered the idea of "giving my son" to God. The reality is that such a phrase is a shorthand for a bigger idea. Obviously, it is not my choice whether he lives or dies. So, I don't have his life literally to offer. What it is that I offer to Father is that I will not turn away because of his death; I offer to do all I can to keep my heart soft and bitterness away; I offer to continue to know with all my heart that God is good and loving and desires what is truly best (not just best from my limited, mortal perspective) for my son - who is first and foremost His son. Note: this offer does not mean that copious tears are not shed or that the heart is not seared with pain - it just means that I will allow Father to wipe away the tears and apply the salve to my heart. I have been blessed to know that Heavenly Father approves of what I have done to prepare John McKay and what he has done to prepare himself to return so that if called back, he will move forward with Father's plan for him without a hitch. To say that I never plead for John McKay to still have many years of quality life and bury me someday would be an outright lie. But, such a thing is not required of me. What is required is to say, and not just say but truly mean, "nevertheless, not my will, but thine, be done."
Fortunately, today, His will is that we enjoy the good news of radiation winning and tumors losing.
22 Mar 2009
Next week, John McKay will be in San Diego with his uncle, aunt and cousins. They just want to have him there to interact with them and have a good time. He'll return the evening of 2 April (as will his Dad from a business trip) and then have an MRI scan hopefully followed by another radiation surgery. (Without having been on the Temodar, they will look at the scans and decide if they should go after 4 or 7 more tumors. It will depend on their growth and on if new ones have appeared.) The preference is to use medicine to shrink the tumors because they are concerned about how much radiation he has already received and they want to use it as effectively as possible. On the Temodar front, the appeal is continuing and the lawyer is researching but the new development is there is a "compassionate care" program through the drug company that can provide the medicine at reduced or no cost if they decide we qualify. We turned in the application so we are waiting to hear both from that as well as the insurance appeal.
In the meantime, John McKay and I had 2 trips to the Family History Library. He has been, both on his own and in conjunction with us, sorting and organizing stuff in the house. He has a talent for this. We have seen NO symptoms at all for a couple of weeks. He is no longer taking the steroid. There are times when we all forget that this monster is in our lives. Those are truly precious times. Our prayer for you is that you can savor these moments in your lives. If you can gain the benefits of our experience without having to go through similar ones yourselves, then we have been able to be of service to you. And that's a great way to show our love for you.
A note from Lori: Thank you from my heart to those who have dropped by, and checked in one way or another. You are all angels on earth, and I love you and dearly appreciate your time and effort. Thank you to the elders presidency for the get together, and the wives who participated. I could use a gathering of love and laughter every week! (Maybe every other?) This feels very selfish to go on and on about my needs. I'm sorry. I still look for ways I can be of help to you, so let me in on anything. I would dearly love to serve in the temple once a week. Sometimes I have a car, and sometimes I don't. If there are any ladies who are interested in going to the temple once a week, and then, if there is time, chatting about stuff over a bite to eat (or not), let's do it. Our home is available almost every day. I have my 6 yr old nephew here Wed mornings till 12:30.
12 Mar 2009
The insurance company continues to deny the Temodar. Due to FDA regulations, most drug companies only seek FDA approval for adults for cancer medicines. Since more adults get cancer than minors, the market is larger for adults. (There are far more medicines approved and available for adults with cancer than children.) So, this makes a loophole, if you will, for the insurance companies. They give as their reason for denial of coverage for the medicine that it has not been approved by the FDA for our specific case. In short, if JMK were 2 years older, he'd qualify. We're up to the 3rd level of appeal at this point. Our doctor and the PCMC staff are being so awesome about continuing to run the paperwork with the insurance company. They are as frustrated as we are with the situation. I have yet to speak with anyone who feels that the insurance company is doing right in this situation. We hope the appeals committee is staffed by people devoted to life.
On the positive side, John McKay got a haircut. He hasn't needed one since 2007, if we remember right. Once again, in one of many acts of love shown to us, our friend who cut it wouldn't take our money. I really feel sorry for people who value money above love. We get to take all our love with us. We even saved his hair just like his first haircut. His hair is so different now. Another friend came over and pruned our peach tree. Many of you want to help and want to do "big" things but what is truly big about the things done for us is the size of the love in them. We thank those of you who have come to the house to be with Lori. I thank you for anything you do to help my family.
John McKay does enjoy playing games and intelligent interactions with his peers. Please think of including him in activities of that nature. (In fact, a group could even arrange to come to his house.)
7 Mar 2009
One day this week, a scripture really stood out to me as something I can say regarding my son. It is from the Book of Mormon, the first part of Moroni 9:22 which reads "But behold, my son, I recommend thee unto God, and I trust in Christ that thou wilt be saved; and I pray unto God that he will spare thy life". We are still waiting for the insurance company. The doctors keep giving them more information about the medical history and need. John McKay feels the need to begin taking the Temodar. We are still keeping the 3 April date scheduled for the next radiation surgery. Depending on the insurance approval, we may have to delay that. This is a frustrating circumstance because it is so obvious to almost everyone involved what should be done. And time counts. The tumors aren't pausing their growth to wait out the decision. John McKay is attending most of his classes (except when he has a bad night and needs to have more rest) and trying to do enjoyable things with his free time. Probably the most heart-warming moment was watching him (actually) jump on the tramp with James. This is a sign of recovery from the last chemotherapy. It is nice to see these good signs.
28 Feb 2009
John McKay began showing symptoms again but it seems reasonable that they are caused by edema (swelling) of the brain tissue surrounding the tumors. This seems quite reasonable as the symptoms have desisted since he has begun taking steroids. As there was about a 50% chance of swelling as a side effect of the surgery, we are disappointed but unsurprised. It is a very heart-rending experience to see him suffer the effects of the swelling. He had sat down to eat and it hit him. His right side was affected. He couldn't feel the right side of his face so he couldn't speak words intelligibly. He tried to write and could form the letters on paper but words eluded him. He finally communicated (by a combination of pantomime and lip reading) that he was afraid he would bite his cheek. I offered literally to hold his cheek away from his teeth but we waited. After a few minutes, he began to feel it again. But, his arm was still troubled and his right index finger moved of its own accord. Finally, he was left with a headache.
The insurance company is frustrating us. They have not yet authorized the medicine that all the doctors feel is the best for this situation. Pray for their hearts to be softened. His next surgery is scheduled for 3 April - but they want him on the medicine for at least a month before that. So, we are feeling very uneasy.
21 Feb 2009
John McKay chose to spend the morning yesterday at the Family History Library. Then, we went to Huntsman for the radiosurgery. Thursday was spent with pre-op stuff. The scans showed that there are 3 and possibly 4 more tumors. They went ahead with the surgery and attacked the 4 biggest and/or most symptom causing tumors. We are waiting/hoping for the insurance company to authorize the Temodar which is the oral chemo the doctors want him to use. The plan is to get him on the Temodar (monitoring him weekly) and do more scans in 6 weeks. They hope the Temodar will begin to shrink the remaining tumors and they are willing to do all 7 remaining tumors in a single radiosurgery after the 6 week scans. The main risk of the radiosurgery is brain swelling but he hasn't shown symptoms of that as of yet. John McKay's core belief is that he is going to kick this - but the present is sure miserable and scary. It's very hard that so many people believe he's going to die. He would sure enjoy it if some of his peers would arrange to come play some games with him. In the midst of playing games, one can forget the medical woes hanging overhead and just enjoy living.
14 Feb 2009
John McKay has begun to show symptoms (which are stroke-like): numbness, slurred speech, loss of balance, vision problems (all of which so far come and go) and headache (which right now seems to vary in intensity.) So, it appears good that we set up a radiosurgery ("gamma knife" and "cyber knife" are types of radiosurgery) this week. The schedule is for Thursday to do the preparatory stuff (have the within 24 hours of surgery MRI and CT scans; make the mask, etc.) and for the surgery on Friday (20 Feb.) It is a non-invasive surgery wherein they have multiple rays enter his head from different paths and converge on the tumor. Since he has so many tumors (8 separate ones,) they want to do it in 2 sessions 6 weeks apart. The doctor (along with her fellow doctors) will decide which 4 tumors are priority and do them first. This is an outpatient procedure. He will also begin taking an oral chemotherapy drug daily. (This means he will NOT need a central line put in at this point.) Six weeks after the surgery, another set of scans will be done both to check progress and to prepare for the next surgery.
It has been so wonderful to see him able to choose activities that make him happy rather than feeling the need to spend his non-school hours on homework. His favorite class is Seminary and he enjoys his daily scripture study. He has enjoyed his interactions with his friends. I feel that part of all this is giving him something to live for right now. He understands the future and preparing for it but there is the issue of the present and it is wonderful to be able to balance the pain and difficulties of the present with some happiness in the here and now.
Some of you were privileged to hear James' talk in church on faith last Sunday. He bore his testimony and expressed his trust in the Lord. He also spoke of a new way I have of looking at faith. Years ago, a riddle was posed to me: "A man without eyes saw plums in a tree. He neither took plums nor left plums; how can this be?" After figuring it out, I have passed it on to others over the years. Among them, of course, were my sons. On the surface, it seems impossible to solve - but in the moment one solves it s/he knows that it is the solution and it seems so clear. As a matter of course, I will not take from anyone the joy obtained by solving the riddle themselves so although I was frequently importuned by my sons, I would not give them the solutions - only guidance if they were going the wrong way (such as thinking it was a wordplay.) A week ago yesterday, John McKay excitedly came to me to let me know he had just discovered the solution. And there was great joy. It was a moment to share with his family and to write in his journal. James responded that is still seemed impossible but that he knew John McKay and I would not deceive him so there must be a solution. That was when I was given the new perspective. I saw that John McKay had moved from faith that there was a solution to knowledge of the solution. James remains in a state of faith. One the higher level, we are living with this riddle of how can this experience make us happier and bring to pass Father's will for our happiness. We have faith that He has the answer but we see it as impossible. Sure, we can take stabs at it and try to figure it out. But, the solution is not yet ours. It is our faith that the solution exists. We have been the recipients of love and revelation from Father that have built our trust in Him. I know as fully He loves me as I know that I love John McKay. And I know that He knows there is joy in store for us as we discover the answer to this riddle. It is our sincere hope and prayer that others can draw strength from this concept as they deal with the riddles of their life.
8 Feb 2009
We are so grateful when those who ask us about John McKay have read the updates. It is amazingly painful to go through details repeatedly. However, we are generally o.k. talking to people who are up to date. Feel free to share this site with others. As I spoke with some people today, I thought some more specifics were in order. I had to ponder how cancer kills and finally recognized that what it does (besides taking nutrients from good tissue) is to push the good stuff out of the way and to put pressure on it until it can no longer function. Right now, the tumors are not causing symptoms. They are crowding the brain but not blocking any functions enough to cause symptoms. This could change in a minute or not for a long time. So, the goal of treatment (now) is to stop the tumors from growing (or at least to slow their growth) so as to avoid symptoms. Theoretically, he could remain with tumors and without symptoms for a long time if the right combination of therapies could be found. (In all this, we talk of time - John McKay would like about 70 years. In reality, no time factor is given. But, one gets a definite feel from the doctor that miracle length starts sooner rather than later.) So, the focus is on balancing the treatment so it has few enough side effects to keep a quality of life and enough punch that it gives quantity of life.
A word of praise is in order for his teachers and school. They have agreed to take the school pressure off him. We wish him to stay in the same school milieu with the students and teachers he's with but can't have him averaging 18-20 hours of homework a week. We don't want his life to be homework but want him to be with and interact with those intelligent people. So, they have agreed to give him good grades (so he won't feel compelled to spend all his life on schoolwork) based on his participation in class. Right now, he's still attending all day and plans to continue as he feels up to it. We are so grateful that he will now have afternoon and evening time to use for things that he can do that are happy while he still has the capacity. This is an example of how people who love him are doing all they can to help him.
It's hard to strike the right balance as we communicate all this. It's fine to talk with us about it to get clarification. (I hope John McKay will let this next sentence by. If he does, it'll be with a shy look.) Go ahead and offer to take John McKay out - for ice cream or a fun activity. We want to add all the happiness to his life we can. For all that goes, same with Lori. She loves to interact with her friends. And don't forget James. There are moments when something hits and the tears just flow - but there are many more moments available to be filled with happiness. And we want John McKay to have his lifetime quota of happiness - from my perspective, I think he's had his lifetime supply of the other. And, if we cry in your arms, just let us cry. It just means that you are a special person who makes us feel safe enough to cry. Our circle of love has so many wonderful people in it. We hope that we can somehow let you know of our love for you and our desires for your happiness.
5 Feb 2009
Those who love us may want to grab a kleenex before they read on. John McKay had another MRI and the spine looks good. We didn't get the worst possible news. Quite possibly the second worst possible news. The tumors in his brain are growing rapidly. This cancer has survived the mega-treatment that almost always kills it. They gave him the strongest treatment they have and it didn't work. So, now they "want to give him some more time." There are some things that can be tried. But, what the doctor really prescribes is a miracle. (If only the Pharmacist up there would grant it. But, we have our faith that He will do what is best for John McKay in the eternal scheme.) In the meantime, John McKay will get another port put in (a minor surgery) so we can give him some chemo at home. The doctor is going to put together a course of action and we will meet next week (probably at the end of the week) to discuss it. We are leaving John McKay is an much control of his life as we can so he makes as many of the decisions as is reasonable. As to how to help us, you can speak to us about our life. Although it seems our lives only consist of cancer, there are positive things in them. Also, the support of a touch of the hand or a hug is powerful. It feels very alone at times and that contact gives a physical sign of support that means so much. John McKay's Mom especially likes stories of people who survived. (Please don't talk about those who died of it.) We understand the most probable future and dwelling on it doesn't help. Only those who know they are going to die can truly live - and we want to focus on life.
24 Jan 2009
For the last month, John McKay has been focusing on uniting mind, body and spirit in the fight to cut off the blood supply to the tumors and letting them die. Several times a day, he self-talks using a script he wrote instructing his body to do just that. He is growing stronger as he moves away from the chemo. His hair is back on his head except for the patch he lost the very first time when he had radiation back in 2006. He is scheduled for another MRI (both brain and spine) on 3 Feb with finding out the results on 4 Feb. As I spoke with the doctor, the biggest point she made about the 10 Dec MRI was that it confirmed that the November masses were not a fluke but obviously something we need to keep tabs on. To see John McKay, one would not think of him as having tumors - although one easily believes he has been through some physical trauma. Your continued prayers for angels to minister to him and support his mind and body's efforts to destroy the tumors are most appreciated.
24 Dec 2008
We feel an update is probably welcomed by many of you at this time. Our spirits are calm. The peace of the Lord is in our hearts. The doctors do not show a sense of urgency so we are not feeling pressured to do something immediately. The results of the blood tests from 10 Dec. still show his counts to be very low. This is not surprising and it shows that his body still has not recovered from the last chemo. We are focusing on strengthening John McKay in mind, spirit and body as we all seek the best possible course of action. Please continue your prayers for him to be strengthened in mind, body and spirit.
We thank those who have shared with us-both known and anonymous. We feel your love and concern. We wish all of you readers of this a Merry Christmas as we remember the greatest gift of all (the Atonement) and a Happy New Year as we look forward to more blessings being poured out upon us all.
10 Dec 2008
Raw emotion as we feel socked in the gut. Rather than being gone as we expected, the tumors have grown - maybe 30%. We looked at the scans right after so this is first approximation stuff. The growth in them is apparent to the naked eye. The oncologist still has to be told so we'll wait for her to contact us regarding what is next (and we will update here.)
One thing that we feel very strongly about is the way some people might look at our experience vis-a-vis our Heavenly Father. We would find it offensive if anyone EVER tried to use us as an example to demonstrate a point against Father. Our wisdom is not His wisdom and our understanding is not His. If this life were all there was, one could have valid points to illustrate the unfairness of it. Temporal/Earth life is unfair. But that's NOT the point. Its purpose is to show us what we're made of. It is to let us develop in ways we never could have without it. It is to teach us in accelerated ways and means. It is not about what we do but about what we become. And, our testimony of Jesus Christ (in part) is that his atonement has within the power to make everything right in the eternal scheme. To have every good act automatically be rewarded while every evil act is automatically punished is to make us like Pavlov's dogs and not like our Father in Heaven. I feel that Heavenly Father cries for us even as we cry for our son but He has a perspective that keeps him from trading something better for something that is just good. Our future could be very rocky. But Father and Jesus will carry us. Of that, I am as sure as I am that my Dad and Mom love me. And I know both things in the same way.
To those of our support group who doubt or disbelieve in God or his part in our lives, I appreciate your willingness to accept us for who we are and your efforts to understand how vital our faith is to us in this circumstance.
7 Dec 2008
We wish to thank immediately the hundreds of people who fasted and prayed for John McKay today. We pray you will all be blessed and enjoy a spiritual experience for your efforts. Our faith is strengthened by you.
The scan is scheduled for Wednesday and we may not find out results until Thursday. So, we will post either Wednesday night late or sometime Thursday evening.
25 Nov 2008
We went to PCMC again today. The tumors do not have ordinary pathology. The doctors feel that surgery and/or radiation would not be helpful. There are some other chemotherapies they would like to try but this is fairly new ground. We have decided to wait until the 4 week mark and have another brain MRI before we make a decision. This will give a chance to see what changes have occurred in the tumors over that period. The date of this is Wed, 10 Dec 2008 in the late afternoon. As we look toward this, we have a
request of all those who share an interest in this: Will you please make Sunday, 7 Dec 2008 a day of prayer and fasting that "Heavenly Father will cleanse John McKay of cancer even as Christ cleansed the leper." (Matthew 8:2-3) Please ask all your friends, associates, church groups, etc. to support us in this. We have faith but also need the faith and prayers of many in this. Thank you in advance for your support.
24 Nov 2008
The long silence has been broken. We are watching the miracle prayed for unfolding. All the other tests failed to show cancer. We have an appointment in the morning to get more information and discuss options. At times of late, it's seemed very surreal but we did see the MRI's ourselves and saw the tumors so we know they are there. Now, to make them go away...
18 Nov 2008
I am only updating this tonight because several people are expecting an update. Unfortunately, we know nothing at this time. When they have checked out all the scans and decided on what course of action they feel is best, then THEY will contact us. Until then, we just have to wait. I hope to update this soon with more news but we literally have no news. Please keep praying fervently for us.
13 Nov 2008
Sadly, I am updating this again. Yesterday (12 Nov 2008), John McKay had his followup MRI (6 months out of treatment) and it showed some more tumors on the brain lining. They figure it's still the PNET and it's now returning after not being attacked for 6 months. The MRI was only of his brain. So, they want to check out all the possibilities of wherever it might in his body. Today (Thursday) and tomorrow (Friday), they will check out his spine (both MRI and spinal tap), bone marrow, bones and internal organs (using CT scan and radioactive tracers.) After they find out where all the cancer is, they will consult with the team, etc. to determine what they believe to be the best course of treatment. The hope is to determine that by next Tuesday. The tests are all at PCMC as an outpatient.
We don't know what else it is Heavenly Father wants us to learn from this but we're praying we can learn it and put all this behind us. All of you who are so inclined are requested to pray for us - and ask your church groups and associates to do so as well. John McKay himself has not shown much emotion about this. We're all in the initial shock of it. It is HARDER each time you are told your child has cancer. It is not a case of been-there-done-that and we know what to do next. But, we will keep doing.
14 Aug 2008
Yesterday, John McKay had his port removed. This was after Tuesday's MRI which showed "stability" of most everything and even some "resolution." His MRI's will never look "normal" again. Stable means no change and resolution refers to things looking even better. The port removal is both practical (because it was a foreign body in him) and symbolic (as it means he no longer needs to be regularly accessed.)
The family trip was an awesome experience for the whole family. We watched hair return to most of John McKay's head. He was able to drive a little on it (but his foot is not yet strong enough to slam on the brakes.) It was meant for John McKay and James to be able to strengthen their testimonies through being where prophets have been, seeing what prophets have seen and, most of all, feeling what prophets have felt. It succeeded in this. John McKay wrote voluminously in his journal. Not only did we see sacred sites from church history but also from national history and a couple of sites that weren't so sacred were also enjoyed along with visiting some relatives.
As for the future, they'll do MRI's every 3 months for a year and periodically for 5 years. This site probably won't be added to unless something comes up that is really unexpected.
Again, let us thank you for your love, prayers and support.
22 Jun 2008
It is all good news as John McKay continues to progress. He rarely uses the walker anymore and manages stairs (albeit slowly and carefully.) He is down to just one medication as of our doctor visit this week. He has finished all his school work (in the end he only lost 1 credit due to all this - many thanks to the folks at MJH for their understanding and willingness to adapt for us.) His hair is more than just peachfuzz. His eyebrows are also returning as are his eyelashes. He passed his driving test but his feet are still weak so he has only driven a little. He is eating more although not as much as he once did. He is less tired and his sense of humor and keen intellect are apparent. Another MRI has been scheduled for August to be followed by surgery to remove the port after they check it all out. Please continue to keep him in your prayers as it is hastening his recovery.
1 Jun 2008
Our challenge continues to be the sprained ankle. Please pray that John McKay's ankle will heal such that he will be able to walk on our trip. That is his determination. Other than that, he is eating some food now and not using the IV feeding. In fact, he has not had his port accessed for many days now. He has finished most of his 9th grade schoolwork. He lost his peach fuzz hair but now it's coming back again (hopefully to stay this time.) His attitude is good and he is back to his good old self.
22 May 2008
Some joyful news and a little setback: Last Sunday, John McKay started walking on his own again. He even passed the sacrament in Sacrament Meeting. However, going down a couple of stairs, he twisted his ankle which has him back to needing assistance. His MRI's on Tuesday showed that some more of the dead cancer cells are gone. "Improved" and "stable" were the words used to describe it. (Improved means smaller areas and stable means no change.) He is tapering off the IV feeding. We want to have him able to go on the big trip this summer and things are currently "go" for that. Last night, he attended his 9th grade Achievement night and we had tears in our eyes as his classmates gave him a standing ovation.
10 May 2008
We just received with joy the news that the infection is gone and he doesn't have to take the medicine that causes him so much grief anymore. He did have the transfusion yesterday. So, now there is hope for him to move forward and just focus on rebuilding. His physical therapist was here and John McKay was doing excellently. He's working on stretches and strengthening exercises aimed at enabling him to walk without the aid of the walker. He has been working on schoolwork today. In short, lots of signs of living - not just existing.
8 May 2008
The latest blood counts show that the white blood cells are being manufactured again which means he can stop one IV medicine. The red blood cell and platelet counts are still low enough for him to need yet another transfusion tomorrow (9 May). He has done a little schoolwork and we're hoping to be able to get him his credits for this year. Today, we got his ears cleaned out and he can hear "more clearly." The ototoxicity of the chemo is considered to be permanent damage to his hearing in the higher frequencies, however. There is a test pending about his infection (48 hours) but we are praying that that may end. He has sat down some to play the piano again which is great to see.
3 May 2008
We are happy that the last of chemo is over but to put it in perspective, think of setting a broken leg. The injury has stopped when the leg is set but you still have pain and healing to take place. John McKay has a bacterial infection that is pretty bad. The medicine he has to take makes him VERY nauseous so he has been vomiting often again. It also causes stomach pain so he has had to take pain medicine. We are praying for his body to overcome this infection. He had to get blood platelets on Thursday (at Primary's) but that is something to aid in his recovery. This was due to Wednesday's blood counts which should be the lowest now for the rest of his life. He still gets blood counts checked twice weekly as long as he is on TPN (IV feeding.) We are seeing some fuzz on the top of his head.
28 Apr 2008
Great cheers and joy here as John McKay has now finished receiving chemotherapy. Many people came to wish him well. He was able to acknowledge them as he was helped into the house. Unfortunately, today has been a day of his feeling the side effects acutely. But, now, we look to a future without the cause of the side effects. Our focus is on his getting better - not just well enough to get some more chemo. It's a marvelous thing. The next few weeks will be similar to the first weeks after any treatment. But, then it will shift. We are grateful for the treats left anonymously for us. We look forward to the time (hopefully during May) when John McKay will begin eating again and be able to enjoy them along with the rest of us. He has MRI's scheduled for 20 May and a doctor visit on 21 May.
24 Apr 2008
John McKay is now home. He has finished the in-hospital portion of his chemotherapy treatment. He did need a blood transfusion part way through it. He is tired and weak. Monday, 28 April is scheduled for the very last of all the chemo. After that, we just focus on getting him well. It was touching to see the newspaper picture and article about the Eagle Court of Honor.
22 Apr 2008
John McKay is currently in Primary's Children Medical Center receiving the final chemo.
20 Apr 2008
Thanks for all the support given at the Eagle court. Again, a huge success. We just got the blood counts for today and the platelets are up to 72. Although 75 is the ideal, 70 will do if one is already count-delayed. So, we are packing bags and planning on entering the hospital for the last chemo on Monday.
18 Apr 2008
Last night's birthday celebration for Lori was a huge success. Lori was so happy. John McKay was there and visited with many people. James enjoyed himself as well. John McKay had made a mobile with origami peace cranes as a gift to Lori. It took a lot of hours and was a labor of love which now hangs where Lori can see it first thing in the morning and last thing at night. She was very touched.
His counts are rising and ALMOST high enough. He looks quite good (having been so long without chemo) and has spent several hours at Seminary and in the school library as well as working on the slideshow for his Eagle Court of Honor. (Thanks to our friends who have provided the computer and taught him how.) We continue to look toward next Monday as a likely date to begin the last chemo hospitalization.
13 Apr 2008:
The platelet counts are now at 48. This means another delay. Due to Lori's birthday and the Court of Honor, the next try to enter the hospital will be Monday, 21 April. It will depend on the counts that will be taken Sunday, 20 April. We continue to accept that the Lord's hand is in this all and feel His love. Our prayers are for His will and that all will happen that is best for John McKay.
9 Apr 2008:
The counts didn't make it. Only 38. The next blood draw is scheduled for Sunday, 13 April. Now, we move to living 3 days at a time as we did last month. If he goes in on Monday, at least the hospital part of the chemo will be done for Lori's birthday and his Eagle Court (which is Saturday, 19 April at 6:30 at the church.) We still trust in Heavenly Father and that He is doing what is best for John McKay. Thanks for the fasting and prayers and we hope for good news on Sunday.
7 Apr 2008:
The platelets count rose to 25. He needs 75 by 7:30 p.m. Wednesday (9 April). We're inviting anyone who wishes to to fast anytime between now and 7:30 Weds. night for his body to be ready for his final treatment as demonstrated by high enough counts. Thanks for your support.
5 Apr 2008:
John McKay is feeling pretty good right now. He has been able to do some schoolwork. Although the platelet count is not yet high enough, he has not had a transfusion as he is not having blood in his vomit or excessive weakness. In fact, he even went downstairs for a while yesterday. He's not seen the basement for months. Please keep praying specifically for his platelets count to rise by Wednesday. That way, he can enter Primary Children's Medical Center on schedule Thursday.
29 Mar 2008:
The infection is gone so right now all that John McKay has to focus on is the blood counts. The blood is drawn on Sunday mornings and Wednesday evenings and the count results are known a few hours later. If his counts fall below a certain level, he receives a transfusion. Then there is a range where we wait and see. Finally, when they are above a set level, they give him the next session of chemotherapy. We really hope and pray the counts will allow him to stay on schedule and go into Primary Children's for his final chemo on 10 April. Doing so would mean the very last chemo infusion would take place on 17 April and we would have that to celebrate along with Lori's 50th. His Eagle court of honor is still scheduled for the evening of 19 April.
27 Mar 2008:
John McKay got more blood platelets today. More importantly, we got the results of Tuesday's MRI: It looks "stable" and the spot that caused worry before is either stable or possibly reduced. His other infection may be gone (the first of 2 tests showed negative.) His counts are still low and we request your prayers specifically in behalf of them.
22 Mar 2008:
Except for some vomiting, John McKay seems to be recovering quickly from the most recent round of chemo. He did go into clinic for the last part of session #5 on Thursday. He is eating some jello. He is still on an antibiotic and we hope that soon that infection will clear up. This Tuesday (25 Mar) is another Brain MRI and then we meet with the doctor on Thursday (27 Mar) to discuss it. We are seeing flowers some of you planted poking up through the ground and enjoyed the treats given to us. When offering family prayer, John McKay frequently mentions the wonderful people who surround us. We feel truly blessed to be in this ward, neighborhood and community.
17 Mar 2008:
John McKay is now home from the hospital. He is scheduled for a dose of chemo in-clinic on 20 March. His next Brain MRI is set for 25 March. He is scheduled for 10 April for his last in-hospital chemo. Please pray that this will work out.
14 Mar 2008:
John McKay is currently in the hospital. It was an extremely emotionally taxing 11 days waiting to enter the hospital. Finally, he made counts on Wednesday night. Then, there were no rooms available at the hospital. So, they rescheduled us for Friday. We then got delayed several hours and finally admitted late afternoon (Friday). So, he is currently undergoing treatment #5 of 6. It is still possible for him to receive the last dose of chemo on 17 April.
7 Mar 2008:
Right now we are playing a (choose the adjective of difficulty) game of waiting for blood counts. Literally, John McKay is not healthy enough to enter the hospital. His counts are checked on Sundays and Wednesdays. Since they haven't been high enough for the next chemo session, we keep being delayed. If they are high enough on a Sunday or Wednesday, we will enter the hospital the next day. All of this delay delays the ending date for his treatments. We really would like him done with treatments before Lori's 50th birthday on 17 Apr and his Eagle Court of Honor on 19 Apr. Right now, if his 9 March counts are high enough AND he's not delayed for treatment #6, he'll finish up on 14 April. So this is beginning to weigh on us. But, on the other hand, we know only past and present (and those imperfectly) while Heavenly Father also knows the future and what is best. That, coupled with the fact that we know that Heavenly Father only wants our happiness, causes us to request prayers that His will (including his timing) be done. We know that as we exercise this faith that we will be blessed with the best outcome. In the meantime, however, we suffer from the natural shortsightedness of mortality and are very appreciative of your signs of love, offers to help us and so forth.
1 Mar 2008:
As I write this, we are hoping and praying John McKay's blood counts come up high enough that it won't cause a delay in his treatment. He is supposed to get round 5 of 6 this week (3-6 March). Of course, we are praying that if there is a reason that a delay would be better, that Heavenly Father will provide that - for although we know the past and present (albeit imperfectly,) He knows the future. John McKay had blood transfusions on Monday and Friday. After Friday's, he was able to be with his Millcreek NAL (National Academic League) Team as they won the district championship. We are grateful for yardwork, flowers, visits with Lori, hugs, treats and prayers. As we think of prayers, we have a request. It has come to my attention that there are persons who are letting their love and concern for us turn to anger at Heavenly Father. Please pray for them that they may know that Father's hand is over us all in this. We have not doubted His love for us and feel he sorrows with us. We are sad and cry but not angry. It is our hope that all may use this experience to see Father's hand literally protecting John McKay and preserving him. It is only the devil that wants to see John McKay and our family suffering. So, please pray that the faith of our loved ones fail not.
22 Feb 2008:
John McKay finally got released from the hospital on Tuesday. He tested positive on a culture and is on an oral antibiotic 3 times per day. Wednesday night, he vomited blood twice and had to go in for a transfusion of blood platelets on Thursday. He is doing a lot better as of tonight - even having done some schoolwork today. If all goes well, he won't have to be back at PCMC until 3 Mar. for tests and to begin the next session (#5 of 6) of chemo. Thank you for tree pruning, housecleaning, treats, love, hugs and prayers.
16 Feb 2008:
I am writing this update from John McKay's hospital room. On Valentine's Day, I had to leave school early and rush him up to Primary's. He has received 4 transfusions (2 platelets and 2 red blood cells). But, the biggest thing is his fever. At its worst, it has approached 104 degrees Fahrenheit. They will keep him hospitalized until it is below 100 degrees for 24 consecutive hours. He is on antibiotics every 8 hours. But, this fever seems to be resisting all attempts to fix it. James also had fever at home (but not as high.) Please pray specifically regarding healing the cause of the fever, if it is Heavenly Father's will.
Some ways to help
This part of the page is subject to change as ideas come and things are done. Here are some ideas for people who ask "How can I help?"
As time passes, here are some other ideas:
Take us to the temple/attend with us. This works to go with just one of us or a couple or all of us.
Exercise with Lori: invite her to join you on a walk or a bike ride or a trip to the pool/rec center.
Think of James: James loves to get personal mail. Drop him a note. Offer to take him somewhere. Invite him to see a funny movie or video. Take him for a 1-on-1 visit. As he loves Legos, buy him a new Lego set. (You may want to take him with you or ask him which ones he doesn't already have.) Ask him to play video games with you.
Yard work: See notes on housecleaning.
Share a family home evening with us. Back to the top.
John McKay's Story in short summary:
John McKay Kunz was born 10 Jan 1993. His very conception was miraculous. He brought more happiness into his parents' lives than they had ever imagined. I loved him more than life itself. He was always a joy.
In early 2006, John McKay hit the apex of his physical life as he rappelled on an outing. Our dear friend Alan who gave him the confidence to do it snapped a picture of him smiling as he did it. 22 April was a looked forward to day as they were going again. Unfortunately, John McKay had a migraine headache at the campout. That was the first of many. In August, he had one on a Saturday and about Tuesday or Wednesday of the next week, he said that he wished his eyes would quit doing that weird thing. The doctor told us to go to the eye doctor. Our appointment was for Tuesday, 22 Aug 2006 - the day before school began. The eye doctor discovered that he had lost half of his visual field and upon further examination, phoned our doctor, etc. until less than 8 hours later, John McKay was checked into Primary Children's Medical Center (PCMC) for brain surgery. On his first day of 8th grade (23 Aug), he spent 6 hours in brain surgery as they removed a tumor over 1 inch in diameter and drained a cyst about 4 cubic inches large. He came through the surgery well. Pathology discovered the tumor to be malignant and classified it as an ependymoma (with significant dissent.) After time to recover from surgery, John McKay went through 6 weeks of radiation at Huntsman Cancer Hospital. He would go to his Honors English and History classes in the morning, then to Huntsman, then back to Honors Science then home to collapse. The regimen was deemed successful and by the second semester he attended all his classes except gym (during which time he instead functioned as an unofficial library aide.) In May, he received a clean bill of health.
As he and Wesley (his best friend) watched Independence Day fireworks, he got really dizzy and light headed. We took him to an ENT but the symptoms didn't seem quite right for an inner ear infection although it was treated as such. During this time, he completed his Eagle Service project. For Scouts, he had to put up Flags on Pioneer Day (24 July). At one house, we paused and he vomited in the gutter. He wanted to finish the job. The next day, he was getting ready to go on a river rafting trip with the Young Men/Scouts. The brain surgeon had been notified so he had John McKay have another scan. The MRI machine was not functioning that day so they had him have CT scan. Negotiations went back and forth about him going to the outing. In fact, we had loaded his gear at the Scoutmaster's house when the call came that he was not to go on the trip but to have an MRI. The MRI (26 Jul) showed that he had cancer covering his brain and spinal cord. More brain surgery was done to get a piece to biopsy.
After this surgery, he did well the first day. The next day, he rarely spoke and soon there was enough pressure on his brain that he behaved as stroke victims often do. Finally, that was brought under control and he left PICU (pediatric intensive care unit.) That day, the new diagnoses came in: PNET (Primitive neuro ectodermal Tumor). It had been the minority diagnosis of before. Before beginning treatment, they wanted him to heal more from the surgery so he got to come home. At home, as I was helping him to the bathroom, he has his first "seizure." This resulted in an ambulance ride to the hospital. His third "seizure" evoked the sense of emergency often displayed in TV shows. The drama intensified as the neurosurgeon left the surgical theatre to come query me about the precise nature of what happened. He told us this was a brain pressure wave activity and the the next wave could kill him. He wanted to finish the surgery he was working on first but assured me that if another pressure wave occurred in John McKay before that surgery was over, they would drill the hole his head to relieve the pressure within 60 seconds. Fortunately, he lasted the hour and fifteen minutes until he was taken into surgery. When the doctor reported to us after the surgery, he said that fluid had shot out of his head 18 inches due to the pressure on it. (Nothing to a little spurt is typical.) They went ahead and put a permanent drain in his head. The reason the pressure had built up so much was that the cancer covered all the natural drain system from the brain. That convinced the doctors to start treatment immediately. So, John McKay went from PICU to Huntsman's for his first radiation treatment. This radiation was accompanied by a daily chemo that really attacked extremities. His ability to write was impaired and eventually he could hardly walk. He had surgery to install a "port" - which is a way to access a large vein near the heart. It ended under the skin on his chest and he had to have a large needle put in each week of active treatment.
After 2 months of radiation, he was ready to being his 6 monthly sessions of killer chemo. Not all chemotherapy is equal. He drew one of the deadliest cocktails. His first dose and last meal took place in October. So bad was the nausea that he quit eating. During the radiation, he had been on steroids to reduce brain swelling. One side effect was that he gained a lot of weight. He lived off his fat for the next month. When I say didn't eat, I truly believe he ingested fewer than 3000 calories that entire month. 2 sips of milk was all he had for Thanksgiving Dinner. After each chemo session, his blood counts had to return enough to prove he could recover. This tended to take longer each time. When they realized he was no longer eating, they began giving him TPN - this is IV nutrition. Except for his 4 days in the hospital monthly, he was generally at home. I gave him his daily medicines and a home nurse came to do blood draws.
During his April break, he had his Eagle Court of Honor. He wore my old scout cap to cover his baldness but was able to stand to receive his Eagle. At the end of May, although he had not attended very much of ninth grade, he really wanted to go to his advancement night. I sat with him and aided him in walking (he could use me or a walker and often chose me) up to the front. As they announced his name, and he walked across, his entire ninth grade class rose to their feet in a standing ovation. This was an act of unity to become typical. He had just received his clean bill of health and was given clearance for our trip and a plan to return in August for a scan and removal of the port.
We had planned our church and national history car trip for 3 years. It was meant to be the trip of a lifetime and succeeded. I pulled him into Martin's Cove in a rickshaw. He saw many sites from a wheelchair. People were open to speak to him as he shared a ready smile and talked freely of why he was bald. He was living again. Upon our return after 37 days on the road, he had an MRI and was given all clear. He had his port removed and began 10th grade/High School in August.
Wed, 12 Nov 2008 was his next 3 month MRI. It doesn't get any easier the third time you hear that your son has cancer. This time it manifested itself as several small and 1 medium sized tumor. Obviously, they had given him their best treatment already. So, we had several second choice options. Finally, we decided on radiosurgery (also called cyberknife and gamma knife). This is a procedure wherein several weeks worth of radiation is given in a single session. He has this procedure twice at Huntsman's during Spring 2009. The primary risk is brain swelling. This began our life of that. Brain swelling caused him to lose his ability to communicate; he would suffer paralysis on the right side of his body and he would lose his memory for the duration - he literally would lose several days of his life having absolutely no recall. We began to recognize the order of this happening and had to take him in to the hospital many times. Once it happened in California and we recognized the symptoms in Reno as we returned. We drove (very fast) straight to PCMC. During this time, two new chemotherapies were tried. Neither of these were covered by insurance but in both cases, the drug company had a "compassionate care" program by which they provided the drug free of charge. The first was oral and it failed. The second one we began in the Fall of 2009. It was IV every two weeks on Mondays.
For over a year, we had been planning to have Thanksgiving with all the Kunz family. This was the first time in years for them all to be together. John McKay was there at my parents' home. The next week, he hesitated about going with James and me to buy a Christmas Tree. It turned out his walker was not enough for him and he needed a wheelchair. A friend loaned us hers and we picked it up on the way to choose the Christmas Tree. That Friday, 4 Dec 2009, he attended the Ward Christmas Party with us. He drank some Sprite and visited with people. During the night, I sensed a definite change in him. (As he slept with me for much of the illness, I was very attuned to him.) Monday, 7 Dec was the next treatment so I took him in then. He didn't get the treatment. Instead, he was sent home on hospice. Even then, I didn't know for sure what would happen. He had been on the brink of death before. He was pretty much out of it but still responded to touch and sound. During the early morning hours of 17 Dec, I awakened to find him in severe distress. That was when I really knew he would die. At about 1:20 p.m. that day, he stopped breathing for over a minute. Then he came back. This happened multiple times. Finally, about 7:15 p.m., he left us until the resurrection.
Concluding note: The pain for we mortals is extreme. But the hope I have which is a true hope (not just a desire or wish) is that through the atonement of Jesus Christ, the day will come when I will truly be all right with his death.
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