Excerpts
NOTE: These final two sets of updates represents the hardest days our family ever had to live – the recurrence of Phil's cancer. They also mark the beginning of an inner revolution that was going to transform all of us in ways we never imagined. Some of you know the pain of watching someone you love, slowly and steadily leave you against their will. But my hope is that over time it will leave your heart more tender, kind and compassionate. I hope you will be comforted to know you are not alone. I hope you discover redemption in the ashes.
With a heart that knows...
Gina
Click to read Part I, Part II, Part III, Part IV, Part V
Part VI
March 1999
Dear Friends,
Today Phil went in for his first follow-up appointment with the oncologist. Last week he had a CT scan to get a baseline picture of his re-vamped anatomy. The appointment went fairly well Ð all the blood tests were good Ð but the CT still shows a spot on his liver.
The doctors are a bit uncertain as to whether this is something new, or if it's the same thing they saw before. The oncologist is checking this out with the CT scan technician as we speak. Regardless, it looks like another picture will be needed, probably an MRI. It's a very small spot, but the doctor wants to be thorough in getting it defined. We are grateful for her tenacity!
I'm not sure what to think, but please pray that the run-away-train of thoughts won't kick in. We are refusing to bow to fear.
It's funny, I was just thinking that I have been missing our frequent communications, and was just about to send you a note to just say, "Hi." As always, I'm very grateful you are with us, and love you all dearly. – Gina
April 1999
(A personal note to a friend)
...As for me, things have taken a rather miraculous turn – to put it mildly! I've been fairly depressed, and still grieving more than not. I've been living in that flat, dead zone, if you know what I mean. Too afraid to go to the depth of the valley, and the mountain...well, that's just been out of reach completely. Being numb somehow has felt more safe.
But over the last few months I've been practicing "God sightings," which is a nickname from a class I took called "First Loved to Love." It's a way of trying to live more aware of God breaking into our lives in the little things. So I take a "snapshot" of these kinds of moments: maybe in nature, or in a card from a friend, or in some kindness from a stranger – then I celebrate them at day's end, usually with a glass of wine and my journal. It's amazing to feel the heart of God pounding in love for me through these simple acts of kindness in a day. It's even more amazing to me that He chooses to put Himself on display through us...
Anyway, after doing this for a while now, and maybe also by centering prayer, being silent with God, it's like my eyes are SO open, and my heart has come alive! It would take all night to bring you up to speed with my soul. Really, I need to call you! Suffice it to say for now, that it's been like waking up from a long sleep. I'm gushing on the inside, whether it be with Phil, my kids or my friends – even complete strangers!! HA! I'm like a woman unchained, and I've found all this passion in my heart still intact after enduring those months of suffering with Phil. Plus, I have found some real peace again, and I've been able to sleep through the night – something I haven't been able to do for about a year now.
This has been a wonderful time to come to my friend. When I get a decent block of time, I'll give you a call to really catch up. I love you dearly, Gina
July 1999
My dear Friends,
Phil and I are hanging in there. I have made a full recovery these 7 months since my last surgery. Aside from a bout of diverticulitis, I've been in great health!
Phil is struggling with weight loss and low energy. We went to NC on vacation, and it seems to have sent him into a tailspin physically. He's lost another 7 pounds (bringing him to an all-time low of 113), and is very weak and tired all the time. I'm writing to ask for prayer for him.
The last CT showed a spot on Phil's kidney. While they don't think it's cancerous, the doctors are taking no chances and will biopsy the area this Wednesday. It's very small, and the kidney is an unlikely place for the previous cancer to have spread. Still, because of the weight loss and weakness, Phil and I are more than a little concerned.
For me personally, this "dark night of the soul" is producing a faith that I'm not sure I could've found any other way. When all the things you used to do, don't work anymore, all that's left is faith. Through it all, God has made Himself very real – "solid" if you will – in ways that are hard to articulate. It's almost like some other senses kick in, enabling God to come very near to me in the deep places – the places He wasn't able to access before because I wouldn't have perceived Him there until now. So all in all, my previous choice to not hurry through the pain has already produced rich rewards.
There's so much more to tell – about the benefits of not denying the pain – about incorporating grief into the fabric of my life – about how joy and grief can co-exist – BUT I don't want this email to turn into a magazine!:) Suffice it to say that although the price has been high, the return has been extravagant! I love you all, Gina
August 1999
(A personal note to a friend)
I just wanted you to know we're OK. This was a hard one to take. We're just taking it one week at a time. It's great to know you'll be back soon. I'll keep praying you find a house before you land. It was great to see your husband at church, but I was feeling to fragile to hang around. Not everyone knows yet. It's weird, and I know I have to get over this, but I feel somehow responsible for people's disappointment that the cancer came back. Maybe if I can just come to terms with it myself, I might be able to be at church again. Hey, maybe when you get here we can both play hooky! Love, Gina
Dear Friends,
I know it's taken a while to get back to you, but there have been a number of developments since I last wrote. Some of you have already heard, but when they went to do the biopsy this past Wednesday, they found that there were a number of small tumors compressing a duct to Phil's liver, making him very jaundiced. The cancer has clearly returned.
The doctors are putting together a "game plan" that will include a newer chemo drug called taxol, and perhaps some radiation. Surgery is not an option at this time. This chemo, while not without its side-effects, is much less nasty than the last treatment. Phil will go in for weekly doses on an out-patient basis – which is quite a relief.
Prognosis is uncertain. The medical team is leaving no stone unturned, and have CT scanned Phil from head to toe, including a bone scan Ð all of which are clear. The tumors are not in his major organs. So what we have here is a localized spread that is common in people that have had gastric cancer. These kinds of tumors have been shown to be responsive to taxol. We ask you to join us as we pray with all our heart that Phil is among those whose lives have been extended from this treatment. In all likelihood, Phil will begin his first dose next week.
We will be seeing THE specialist in Boston for gastric cancer for a consult as well. There may be a clinical trial Phil can get in on. Also, Phil is going in this Monday at 8AM for a procedure at Beth Israel to open up the duct to relieve the jaundice. Another local doctor tried and failed. Please pray it will be successful this time.
This is all happening very fast, but God has surrounded us by the most compassionate and talented medical people and the most tenacious friends on the earth! Please pray that this round of cancer can be beaten once again. While we are discouraged, we are not without hope. Thanks again for supporting us in prayer. We need it now more than ever. All my love and thanks, Gina
Dear Friends,
Today's procedure (called an ERCP) went very well. The doctor was able to place some metal "tubing" in Phil's bile duct to relieve the compression, which will eventually relieve the jaundice. The unfortunate thing is that during one of the procedures Phil had at a different hospital on Friday, punctured his liver, and bile is leaking into his system. The ERCP should allow for the bile to flow properly now, and the puncture should heal on its own. However, if it doesn't, they have to go in and drain it. So Phil is still at Beth Israel hospital – at least 'til tomorrow.
Chemo starts next week, and we'll know if radiation is possible on August 25th. The doctors tell us that the heart to fight is the strongest factor in this type of recurrence. It could make the difference of years, so please focus your prayers there for us. We are still reeling from the news, and have been playing catch-up on every level. But you are a strength beyond words for us. Thank you again for joining us in this fight. All my love, Gina
Dear Friends
Tomorrow is the first day of chemo for Phil. We put it off a bit to let him rebound from all the procedures he had. The wall stent in his bile duct is working great by the way, and he's returning to normal color!
The current plan is to do taxol on an out-patient basis, once a week for 6 weeks. Then depending on how he's doing, they'll either make some changes, or go for another 8 weeks, 3 weeks on, one week off. They'll CT scan after 4 weeks to see if there's been any change.
So here we go again. Please pray that Phil tolerates the taxol well, and that IT WORKS!!! Also, pray for Phil's energy level, which is a little better, but still very low. Pray for our kids too. They are having a very hard time as you can imagine. All in all dear friends, we need for God to do a real miracle...
(A personal note to a friend)
After talking to my counselor on Tuesday – who cautioned me to pay attention to the "warning signs" that I may be feeling a tad stressed – I got my own attention at Shaws. A very kind, older gentleman was packing my groceries when I noticed he was about to throw 4 pounds of plums on top of my Oreos! I proceeded to tell him in a VERY loud voice how much I didn't want him to do that. He froze in mid toss, corrected himself and carefully laid a loaf of bread on top of those precious Oreos (that Phil actually requested). Another inch and I would have had him by both his arms!!
Realizing I was a "little" over the edge, I was shaking my head at myself as I walked out to the parking lot. I was thinking to myself, "I'm a mess!" and felt myself slipping into a full-blown anxiety attack, when you happened to drive by just as I was exiting Shaws. I tell you, I took it as a "God-sighting," – a little grab around the shoulders to steady me. It focused me on Jesus instead of whatever the outcome of the next doctor's appointment might be. Good timing girlfriend!! Thanks for being there! :) It's the little things...
Dear Friends,
Well, it's been a tough week for us. Phil's been quite sick since Tuesday. We thought he was having a reaction to the chemo, but as it turned out, he had gotten an infection from the wall stent. On top of it, he was feeling a let-down coming off a high dose of steroids they'd given him to make sure he didn't get an allergic reaction to the taxol – sheesh! At any rate, he's now on antibiotics again, and a low dose of steroids to get him back on his feet – literally! He looks better today. Thank you Lord!
So it looks like Phil will continually need prayer against infections from the wall stent. Doctors say this could be an on-going problem. The stent can never be removed, so once again, we pray for the miraculous!
Also, please continue to pray for his energy level, and that he can gain some weight. He's around 108 right now. Please pray for our kids. They are being very honest and real. This has been intensely difficult for them, especially because they thought he would be better after the first round. And it's all happening so fast. To Joel, one day dad was playing catch in the back yard with him, and now dad is always on the couch, and kind of far away. He's understandably angry, and just wants his dad back. But every now and then, even in the midst of all this, we have some really great days together.
And then there's YOU! – All you wonderful friends, praying your hearts out for us. One funny story – a friend had emailed us that he and some friends had colored themselves with yellow highlighter out of sympathy for Phil when he was jaundiced. He said something like, "Glad to hear Phil's getting back to normal color... of course we're still yellow!" I laughed 'til I cried! You are all so wonderful, standing with us in this. Phil sends his heart of love to you all, with deep thanksgiving! We love you very much, Gina and Phil
September 1999
Dear Friends,
I wish I had better news to report, but Phil is continuing to struggle. Although he's a little spunkier than last week, he also dropped another 8 pounds. Tomorrow morning he is having a "pick line" put in his arm, so he can get some additional nutrition through an IV.
We just had the long-awaited appointment with the specialist in Boston. Unfortunately, he has no other recommendations, and there are no clinical trials that would fit the bill right now. He confirmed that surgery is impossible, and that radiation would probably hurt more than help.
He put Phil's CT scans up on the light board for us, and to our surprise we were shown that in addition to several enlarged, cancerous lymph nodes, there is also a tumor that appears to be in his pancreas. And if that wasn't enough bad news, he told us that this cancer is fast-growing.
I'm so sorry to bombard you with all this bad news at once, but now that we know where we stand, I thought it best to inform you right away. You have fought with us for so long, so hard. If God does a miracle, you'll share our joy. And if it should be Phil's time to die, you'll share our grief. I love you all so. We would never have made it this far without all your heartfelt support and strengthening prayer. Even now, we can sense the presence of God, and are comforted.
The next big indicator will be in a few weeks when Phil's had enough chemo to see if it's doing anything. Of course, I'll continue to relay any changes along the way. Until the next time, God's richest blessings on all your lives...
Dear Friends,
Not too much to report really. Phil had a much better week. While he's not very energetic, he is certainly more able to concentrate and think clearly. He started doing a project from work at home. It's been a nice break from the routine of doctors and related appointments! Plus he's gained 5 pounded with the additional IV nutrition. So we continue to fight daily.
Many of you have asked since my last note to you, "So what does it all mean?" The bottom line is this: Medically, there is essentially no hope for recovery. The doctors themselves are putting their best hopes on a miracle. not on any treatment they could give Phil. They think it's more a matter of months than years. God knows the day, and we're content with that.
So of course we want Phil to live his life to the fullness of days ordained for him. It's never over 'til it's over. We continue to walk in a grace-filled place: not giving up, yet able to face the potential of death before us. It has helped us all embrace each day and live it very deliberately. Had we presumed of God that He would heal Phil, I don't know that we would've made the same choices. So while life is hard, there is also a depth of richness we only touched on before. When it's all said and done, we don't want to have too many regrets.
So, by all means, continue to pray for healing, hope and grace to live each day. Also, pray that Phil can sleep better. He's very congested. Not that his lungs are filling up; it's just that these kind of tumors seem to increase the production of mucous in his esophagus and throat. And pray for our kids. As you can imagine, they are deeply shaken by all this. But since they know how serious it is, they too can choose to live for intentionally with Phil. These days have been some of the sweetest we've known. Again dear friends, thank you for standing with us. If Phil doesn't get healed, it won't be from lack of faith, prayer or perseverance. This assurance we have. All my love, Gina
Dear Friends,
Phil is doing fairly well. The taxol still saps his energy for a few days after treatment, but he's usually "back" by the weekend when the kids are home more. It's about as good as it can be in that regard.
We feel like we're in a limbo of sorts – waiting for the next 2 doses of taxol, then the CT scan. There IS a clinical trial coming up in two weeks using a fairly new drug called "endostatin." It works by cutting off the blood supply to the tumors. The type of tumors Phil has are highly vascular, so this does hold some promise. Our friend Jacquie told us about it (THANK YOU!!), and our doctor said Phil may be able to get in.
There are many people out there who will want to get in on this trial. First there will be a telephone screening to see if Phil is eligible. Then there's a lottery draw of names. If Phil's name is picked, he must get past a second screening to be included in the trial. We know that IF this is a provision from God, Phil will be in on this, so please pray to that end. Then at least we'll know that if he doesn't get into the trials, it will have been the best thing from the hands of a loving God. We rest knowing our hope is not the endostatin, but IS Almighty God!
We take great peace in knowing the steadfast prayer that goes up to the ears and heart of God on our behalf. So again, I can't say it enough – THANK YOU ALL!!!!
Dear Friends,
Just a quick note to say it's been a good week. Keep praying!!! We've been enjoying living in a place of hope these days. Phil keeps getting stronger bit by bit. He was able to go apple-picking with me and all the kids on Saturday. It was WONDERFUL!!!
This week Joel has his baseball banquet to celebrate his team's third place finish last season. It's very important to him that Phil be there with him. It happens to fall on a Thursday, which is 2 days after chemo. It's usually the hardest day of the week for Phil to get off the couch. He seemed to have plenty of energy last Thursday, so we're praying it will work out this week that Phil can be there.
Each of our kids is coming to terms with living in a state of uncertainty. They have been tenacious about spending time with Phil -- even the one who has a very hard time finding the words to express their heart. It's been very tender and wonderful for me to witness, and a real blessing to Phil who is coming into a much deeper realization of how important he is to each of our kids. Again, we find gold in the middle of this difficult place. God is amazing, and His redemption knows no limits.
Thank you again for your persistent prayer. I'm sure all of heaven smiles on us with great awe at our tenacity!
Dear Friends,
Just wanted to tell you that Phil was able to attend Joel's baseball banquet. We had a wonderful time. Not only did Phil get to see him receive his trophy -- Joel also got the sportsmanship award which is given to one player on each team for having a great attitude throughout the year. Though it was a little thing, it meant a ton to Joel and to us.
I can't adequately describe how meaningful it was for Joel to have Phil there. Even this morning, Joel is still beaming. He took his award to school for "show and tel!." All in all, it was a total blessing.
Thank you SO much for all the prayer. These little victories mean the world to us! And it reveals to us the loving touches of Jesus all through this difficult place we've been in.
Dear Friends,
Wanted to let you know that Phil has a CT scan tomorrow morning at 10:00 a.m. This will tell us whether or not the taxol has had any meaningful effect against the cancer.
The one thing that seems to be helping Phil's energy level is wheatgrass juice. Ever since he's been taking it, he feels much better. This really leads us to think that the nutritional therapies will be more effective than the chemo. But time will tell. We have a sit-down with the oncologist this Tuesday, and make some decisions from there. Please pray for wisdom on all of our parts. Thanks again for all your love and concern.
Dear Friends,
We met with the oncologist today to discuss the CT scan results. Jury is still out, as there was conflicting analysis from 2 doctors.
What seems to be clear is that there is a stricture at the bottom of Phil's esophagus that needs immediate attention. Right now the opening is so small, it's difficult for Phil to swallow normal tablet-size pills. The pattern is that it is progressing to close entirely unless the doctors can intervene.
So right now, we have to see a specialist for the stricture, and another radiologist is on the case to review yesterday's CT scan to see if he can make a more clear evaluation. The oncologist thought it best to stop the taxol since it doesn't seem to be doing much. The tumors in Phil's lymph nodes seem to be unchanged. There are multiple questions about shadows on his liver and pancreas, and enlarged bile ducts.
All in all the doctors are stumped! We'll consult again with the oncologist in 2 weeks. By then, he'll have put together another possible course of chemotherapy. In between we'll also see the nutritionist. Please continue to pray for wisdom. There are so many roads to take, but we only want to go down the one God has paved for us.
The funny thing about all this, is that Phil hasn't really had any trouble eating and continues to gain weight! His energy level is pretty good, and his spirits are high. We're both grateful for the chemo break. We're praying that by the end of these 2 weeks, we'll know whether or not to go back for more, or to stick to the nutritional alternatives. We are assured that God will make it clear. We love you all.
Part VII
October 1999
(A personal note to a friend)
This Dr. Painter was very nice, and seems capable. Wednesday morning he will place a stent in Phil's esophagus (which is only 8 mm. wide right now!). We get to Leonard Morse at 9:30, for a 10:30 procedure. What are you doing around 10:30? Can you come hold my hand? While he's in there, Painter will see if there is indeed a recurrence of the cancer in Phil's stomach. It doesn't look good. It looks like we're facing a new tumor in the same place as before, 3 new lymph nodes are cancerous in addition to the previous 3, and a 3.5 cm tumor in Phil's liver.
None of this is public information right now. We're waiting until we see Dr. Wisch next week to get the full story, and any options we have before we tell the kids. Only you and the staff know. I'd like to keep it that way for the kids' sakes right now. I'm sending out a group e-mail for people to pray for the procedure on Wednesday, but no details until next week. I hate all this. I'm hanging in there. Talk to you soon...
Dear Friends,
It looks like Phil definitely needs to have a stent placed in his esophagus to keep it open. Right now there's one spot where it narrows to 8 millimeters -- around a 1/4" wide. It's not a complicated procedure, but we'd appreciate your prayers. It will all take place at 10:30 a.m. this Wednesday the 27th.
We also have an appointment with the oncologist next Tuesday morning to get a fix on Phil's status. We'll let you know how it goes. Blessings on all of you.
Dear Friends,
Just a quick note to let you know we spoke to the oncologist today. He pretty much said what we already knew -- that any drugs they try on Phil, run the risk of hurting more than helping. It's all trial and error. He suggested trying to get in on a trial of a new drug, rather than use any of the old ones.
So we'll go ahead and see the Boston specialist this week, and make some decisions after that. At this time, we don't really see the point of doing any more chemo. We're sticking to a natural regimen for now, unless this doctor has something really great to offer.
Phil is feeling a little better since the stent was placed in his esophagus. Thank you for all the prayer and e-mails. Keep it all coming. We're hanging in there.
Dear Friends,
Today was a hard day. The doctors DID find the problem, but they are unable to do much about it. Let me explain...
The reason why Phil is not able to get down solids is that he has a few "kinks" in his duodenum which leads to the small intestines. (Boy, we've all gotten a real anatomy lesson out of all this!) These kinks make it impossible to pass anything more than a thin liquid. They are caused by encroaching cancer, either from without or within the actual duodenum.
There really isn't a solution to the problem. If they put in more stents, there will just be another area which collapses from the cancer. A different oncologist saw us today, and recommended some light doses of chemo to see if they can reduce the kinks. Honestly, we don't know what to do. Things have become dire, and we are preparing for the worst. Unless God turns this around, it won't happen. We invite you to pray with us for healing all the way through. That you are standing with us means so much.
Phil sends his love. And I send mine ...
November 1999
Dear Friends,
It's been a week of re-grouping. We're able to focus again. Against all "odds" Phil continues to gain weight! He's up to a whopping 117 pounds, and is eating some solid foods. Go figure! The doctors said liquids only, but Phil can never take those kind of mandates without checking it out for himself. Go Phi!!!!
He decided against chemo -- at least for this week. We'll just take it one week at a time. He's been feeling pretty good, so he didn't want to jeopardize himself.
Our kids go in and out of having a very hard time. They are being more verbal about their fears, enabling Phil and I to continue to talk openly with them. Please keep on praying for them as well.
Thanks again. We'll touch base with you soon. With great love, Gina
Dear, dear friends:
A very happy Thanksgiving to you all! One of the things I thank God for most often is all of YOU! I am so grateful for your persistent prayer, and your tender love for our family. You have made a huge difference in our lives. THANK YOU from the bottom of our hearts.
Every day is a tremendous gift. We are grateful not only to have Phil with us this Thanksgiving, but grateful because he's been feeling very well these past few days. Again, he gained weight -- now 120! His blood counts are up -- even pristine! Regardless of how God works this out, we want to recognize and bless God for this miracle today!
We have been surrounded by God's provision throughout these months, and many times you have been His hands touching and mouth speaking words of life. I am overwhelmed as I think of you all this Thanksgiving, and am without adequate words to express the deep gratefulness in my heart. Know that Phil and I love and appreciate you all dearly. And we pray that God would multiply back to you exponentially, all that you have poured out on our behalf.
With all of our hearts,
Phil and Gina, Rachel, Jamie, Joel and Matthew
December 1999
(A personal note to a friend)
While it was intensely difficult to let you into the place I was in last night, it was immensely comforting that you came. I'm glad you were comfortable enough to invite yourself over! :) I know I certainly couldn't have done it in the shape I was in! I slept last night -- actually went to bed before midnight. Whenever I did wake up, Phil seemed to be snoozing away, so I just fell back to sleep. I'm still deeply sad, but the ache has gone away. I attribute that to you -- "Gracie!" :)) !
Carol prayed my heart back to me this morning. She said that there simply isn't the room I need for my heart right now, and that God could see it all, and was not expecting anything more of me. Again, God through Carol was giving me permission to be in pain and not be able to do anything about it. It's OK. So to hear those words meant a lot -- more than Carol could have known. :)
As she prayed, I had this picture of a boxer in the ring, sitting in the corner, waiting for the bell to announce the next round. All I could say to the Lord is, "I don't want to get back in that ring. I don't want to fight anymore. I can't fight anymore." Yet, I feel that somehow I must. But the only way I can do it, is if Jesus Himself grabs the gloves and throws the punches for me. He's the only one who can see the target anyway. It's just too dark for me to see right now. But He can. I'm so glad He can see in the dark ....
Dear Friends,
Just a quick note to check in. Firstly, we're continuing on with our AOL address for a while. Even though hotmail is working well enough, we're not ready to change over just yet. So until further notice, this gpraino address is still the best one to use.
Phil has been stable, but feeling pretty poorly lately. The latest CEA (blood test that tells the amount of cancer in your body) showed an increase. Because the disease is crimping the top part of his intestines, he hasn't been able to ingest the amount of vitamins, and other nutrients needed to impact his immune system. So it looks like we're going to try some low doses of chemo. Phil will start with weekly outpatient treatments beginning this coming Tuesday the 14th. If he can't tolerate it, we'll back out of any further treatment.
Thank you all for standing with us. Continue to pray for the kids as they process through these difficulties -- especially during this holiday season.
Dear Friends,
We thought it would be nice to send along a picture for Christmas. We realized that many of you have been praying for us all this time, and have never seen us! I hope most of your computer systems can download the picture. A friend of ours took it for us this Fall.
I keep wanting to write, and wishing I had something encouraging to report. Unfortunately, Phil's condition has grown steadily worse. It seems that the "crimping" of parts of his GI tract are behaving like an obstruction. Even liquids can't pass through now, so he can't keep anything down. All of his nutrition is coming from IV which he gets every night. He is in the hospital at the moment battling an infection and dehydration. We are hoping to have him home tomorrow, but something will have to be done soon - either some kind of tube to drain his stomach remnant, or another stent internally to get things moving again. Most likely we'll wait 'til after Christmas to do anything. Plus, he needs to recover before he can endure any kind of invasive procedure. We are really praying they can place another stent so he can eat again.
Although we are all a bit worn out, I will tell you, the wondrous part of all of this is the presence of God. It is so true that He is near to the brokenhearted. We keep finding Him everywhere - especially in the caring hearts of our friends. Someone heard that we were in desperate need of a second car for our oldest daughter Rachel. She's been a tremendous help with running errands, and being another "taxi" for our younger kids. So some anonymous friends contributed a little over $7500 which we just received as a gift through our church!!!!!!!! Our entire family is overwhelmed at such an outpouring of generosity and love. Perhaps some of you were involved in this little anonymous caper - so please receive our deepest heartfelt thanks. We are overjoyed because of you.
So we find ourselves in both deep sorrow and joy this Christmas season. Thank you for making this journey of ours a little easier to bear. We all pray that this Christmas you are overwhelmed by the nearness of God. I love you very much, Gina
Dear Friends,
A quick report ...
Phil has to remain in the hospital until they clear him of the current infection. It's related to the stent in the biliary duct. His blood counts were also low, which accounts for the severe lack of energy. The most disappointing news was that they can't do anything to relieve the blockage. The intestines are too fragile to place stents in. We are coping with running into these dead ends.
The doctors are doing everything they can to get him home for Christmas. Please pray to that end.
Dear Friends,
I know, I know you don't hear from me for days on end, then it's 3 notes in a row!!!
But we had a great surprise today, and I wanted to tell you that PHIL'S HOME!!! He's recuperating from being knocked flat these past days, but clearly on the rebound. He'll be on antibiotics at home to keep fighting the infection. I am particularly happy that I didn't have to get my "boxing gloves" on to fight with the doctors about releasing him early. The kids were blown away. It was yet another "present" from Jesus to us this Christmas! Phil sends his love, and thanks.
Dear Friends,
All has been well at the Praino homestead! We had a terrific Christmas!! Our oldest daughter Rachel said it was THE best Christmas we've had, and I couldn't agree more.
Miraculously, Phil felt great and was interacting with the kids and I as if he was barely sick! Since there is no other real explanation, we wholeheartedly believe that God just did it -- probably because of the huge outpouring of prayer for our family. I know you all were praying overtime when Phil landed in the hospital. Thank you so much for taking time during THE most hectic time of the year to pray for us. It was so evident by the intense grace we had, not only to make it through, but to enjoy it so much. It was one for the memory books!
Since then, Phil's been pretty tired and the routine of not being able to keep anything down gets old. But he's hanging in there, and plans to start some chemo next week to see if he can get some shrinkage of the tumors. However, if it's too hard on him, we'll stop right away.
All in all, we are enjoying the good days, and weathering the tough ones. And while the hospital stay was particularly hard for the kids, they have doubled their enjoyment of Phil since he's come home. And he of them! It was especially fun for Phil to give Jamie a little demonstration on her new guitar amplifier! You had to hear them in her room cranking up the distortion. I don't know who was more delighted!
So dear friends, thank you again for enduring this with us -- for praying, for caring, for loving, for supporting, for being there. We would be so much poorer without you.
January 2000
(A personal note to a friend)
Thinking back over the last year:
There have been many bagfuls of gold nuggets that have impacted me this year. I did have that wonderful awakening. I realized the treasure before me and found the friend of my life! :))) I realized how precious a day is. I discovered many of God's "hiding places" in the people around me. I found out that it is possible to have ecstatic joy and heart-wrenching sorrow all at once. I made a few strides in losing the religious baggage I'd picked up during my journey so far through Christianity. I embraced how God made me to be just the right Mom for my kids. I fell in love with my husband again. I was blessed beyond measure by friends, family and even people I don't know. I walked in the depths of hell and found Jesus there. I understood that God had not left me to walk this path alone -- that He had given me a traveling companion in you, and had made His own beautiful presence plain to me through it all. I learned that God is near to the broken-hearted. I grew in compassion as I grew in understanding my own shortcomings. I learned how to pray without words. There has been SO much that God has done in me, but most of all, I too have been seized even more deeply by the power of a great affection and have taken it to my innermost heart. I am not the same...
Dear Friends,
Today we made the difficult decision to NOT pursue any more treatment. Phil seems to be getting weaker by the day. Our doctor has made arrangements for hospice care which should keep Phil as comfortable as he can be at home.
This was a very hard decision for us because we've been in "fight mode" for such a long time. But today we realized that even with the best chemo available, unless God heals Phil, we'll just come around to this place again. In addition to that reality, Phil himself has come to a place of truly wanting to go home. It's the first time he's talked like this, and I wonder if he doesn't know something I've been unwilling to hear.
Many of you have thanked me for sending out these updates. In all honesty, it is a comfort to me to send them. I can speak out loud some of the hopes and fears we've experienced as a family, to a group of loving friends who WANT to hear -- a group of friends who have cared so much as to walk this painful road with us. There are no words to tell you how much that means -- especially now.
We are not bitter or despairing. We had the miracle of a wonderful Christmas, and the miracle of an extra year and a half of life with Phil since the first diagnosis. Perhaps the greatest miracle of all is that through it all, we have been seized even more deeply by the power of a great affection -- God's affection for us, and ours for Him. His presence has been so real and tangible through this time.
So while we are terribly sad for everything that's happening, we are comforted as well. And you, dear friends, have been a huge source of that comfort to us. Thank you for your tenacity and your continued prayer as we walk these coming days together.
Dear Friends,
Right in the middle of everything that's going on, two really great things happened for our girls this week.
One is that we found Rachel a great car. It's a '92 Honda Civic with low mileage that looks brand new, and runs even better. It had all the features she wanted and even has a little remote switch on the key ring to start the car from the house! With the gift money that came in, we not only paid for the car in full, but also a whole year of car insurance for both cars. Again, to all of you who participated in this wonderful gift -- THANK YOU SO MUCH! The other thing is that Jamie was accepted into Norfolk Agricultural High School 4 months earlier than expected! To be honest, she didn't think she'd make the cut. Only 120 of 300 applicants are accepted. We weren't supposed to find out until the 3rd week of April, but she received an acceptance letter just this past Friday! As I opened my arms to hug her, she ran right by me and into the room where Phil was, and told him the good news! Of course Phil was tickled, but I felt like the proverbial "chopped liver!" Actually, Jamie came back and hugged me too! I felt much better! :) She was thrilled beyond belief!
Just wanted you to know that it's as if God continues to jump out from behind the huge trees of this forest we're in and say with joy, "Here I am!" We love Him like crazy. And we love you.
Dear Friends,
Just wanted to touch base with you all.
Hospice care is working out great. They are actually a big help in keeping Phil out of pain for the most part. They come 3-4 times a week to check up on him. He continues to have good and bad days. Thanks to all of you who have sent in e-mails for Phil's memory book. Whenever he can, Phil reads through it and is encouraged by the various ways he has touched your lives. Now that it appears Phil is nearing the end of his life, he has questioned just how meaningful his life has been -- has he spent his life well? -- what kind of legacy is he leaving behind for his friends and family? It has been a tremendous encouragement for him to read your letters and get to hear just how well he HAS spent his life. It means a great deal to him , AND to me and the kids. Thank you from the bottom of our hearts!
(A personal note to a friend)
I figured since it's been a long week without really talking much, that I'd catch you up by e-mail. The ride with Philly continues to be bumpy. I thought he was nearing death yesterday and was hoping he'd hang on until Rachel came home from skiing in Maine. But when I woke up, I realized I'd slept. That always means that Phil also slept. When he got up he told me he felt something break over night! So now we're back to the day-to-day routine. I wish that could be better. Phil told me last night that he felt like he was stuck in a tape loop, living the same awful day over and over again. I reiterated that if he ever felt that the TPN was prolonging his pain to tell me. He's definitely not ready to make that decision.
I've been reading this book about people who are dying and how they develop a sense when death is drawing near. While it's been helpful, I find myself acutely listening to what Phil is saying to watch for clues he might be giving me. I'm just a tad intense! :) Somehow I need grace to tuck the information away, and let the Lord recall it to me when I need it. It's too hard to live like this. Besides, I'm very jealous of anything that would steal the present away from me. Moments are precious, and I want to be able to fully live in them. Before Rachel left, she gave Phil a 6-page book of her own memories of him! They had a tearful, but wonderful talk on the couch yesterday. I was so happy. As she was going upstairs, and as I was walking up to Phil, he just exclaimed with tears in his eyes, "I love that kid!" He read the book from cover to cover. It's the only thing he's read on his own in weeks.
An old friend struggling with his marriage came to see Phil today. He gave him some great advice. Right to the end, God is speaking, loving, imparting, giving gifts, sacrificing, and teaching through Phil. I just LOVE this guy!!!! :) Phil's life example gives him the authority to speak. Through all of this, God is reassuring Phil beyond the shadow of doubt that he has spent his life well, and that simply being who he is has been enough. What a gift!!!!!
Dear Friends,
Phil is currently in intensive care with pneumonia. He is in serious, but stable condition. They are draining the fluid in his lungs and have him on antibiotics. He is doing better, and doctors hope he will be home before the end of the week.
As with each crisis, this one could've been the one to take his life. After discussions with Phil and the kids, everyone agrees if Phil has to die, we don't want it to happen in the hospital, and we don't want him to be in pain. Please pray he can recover enough to come home.
Also, please pray for grace for all of us. The kids took this one especially hard. They realize the nearness of the time, and have been making special efforts to be with Phil and talk with him. They hate that their dad can't be with them right now. As soon as he's up to it, I'll be sneaking them into lCU!
Dear Friends,
I'm happy to report that Phil is recovering from his bout with pneumonia. There's been a TON of drainage from the chest tube to the great surprise of the doctors. They are considering placing another tube on Phil's other side since there's some fluid there as well. It's borderline as to the necessity of the procedure. We're hoping he doesn't need it. Please pray to that end.
The plan right now is to boot him out of ICU today, keep the antibiotics coming and get him home once they're certain his lungs are clear. When I was with Phil yesterday, he was about as energetic and focused as he's been in quite some time. He's intensely looking forward to being home with me and the kids. He hardly has any pain, and is in very good spirits. Each new lease on life is an indescribable gift!
Thanks again for all your intense prayers. Much love and affection, Gina
February 2000
Dear Friends,
Phil is still in the hospital, and is getting weaker by the day. Doctors continue to treat the pneumonia, but Phil just isn't responding as well as they'd hoped. As it stands now, he's too weak to even be moved home. His condition is critical.
I want to reassure you that Phil has read every one of your wonderful letters, and they have meant so much to him. I know it was important for you to be able to tell Phil how you feel about him, so I wanted you to know every message made it to his ears and to his heart. He knows that he will leave this earth a wealthy man, and is content to realize his life was well spent. This is of inestimable worth to all of us. Thank you SO very much. And thank you for all your prayers which will see us through to the end.
Dearest Friends,
Phil finished his hard-fought race today. He died at around 11 :00 this morning. I was with him as he simply fell asleep very peacefully. We believe him to be ecstatically happy in heaven right now, free of pain and sickness and in the presence of God. We will miss him very much.
I want to extend an invitation to all of you to a memorial service to celebrate Phil's life on Sunday, February 13 at 3:00 p.m. at the Vineyard Christian Fellowship in Framingham, MA. We ask that you don't send flowers, but instead call the church about a trust fund being set up for our family.
Again, dear friends, thank you for all your love, support, encouragement and prayers throughout this dark time in our lives. All my love, Gina
Dearest Friends,
We are all coming down from the "high" of Phil's memorial service. It was indescribably wonderful to see so many of our friends from so many different times of our lives. It did turn out to be a giant party -- just what Phil told me he wanted - an Italian Feast!! There was a ton of grace on us as a family to not only "get through it," but to enjoy the day. Looking up into that sea of faces -- there had to be 4-500 of you there -- communicated such love to me and the kids. They were blown away by the turnout, and had a renewed depth of appreciation for their dad.
Things are hitting us slowly, but surely -- kind of like a roller coaster in slow motion. But I have been content to live life slowly, holding each moment sacred, making room for grief -- not as something to be "gotten rid of' as quickly as possible, but as something that can be integrated into life, knowing it holds a treasure that can't be obtained from any other source. God has been very close as we have been very brokenhearted. But with such a faith, and with such a great ocean of friends and family carrying us, we have hope that pain can be comforted and survived. We treasure your companionship through it all.
A cool thing happened the other day -- my doctor was at the memorial service. I was in the medical building he works in the other day for a checkup with one of our kids. He came up to me, and thanked me for inviting him to the service and said he felt, "love pouring into him" while he was there. It was so true. There was a "solidness" to the air that happens when sincere love is present, and God is in the midst. For those of you who were there, who have wondered what I mean when I talk about God being present to me -- that's it! It was even greater to experience that love together.
So dear friends, we are OK. There's likely quite a road ahead of us, but we are comforted to know the prayers of friends go with us...
Hey all you dear friends,
So many of you have asked how we are, I thought I'd send off a quick note.
We have definitely hit some rough times, but are surrounded by wonderful friends and we're holding together. The kids are really feeling it now. I'm thinking we'll check out a family grief counselor to give them a better place to vent how they feel. We all mostly try to protect each other from our own emotions.
This is all uncharted territory, and I'm feeling the need for much more wisdom than I have right now. It's a great comfort to have so many praying and loving us near and far. As I pulled into the driveway this afternoon, I saw Rachel's car, and thought of you all. I still get overwhelmed at the generosity you've shown us, and every time I see that car I remember just how loved we are. You are a wonderful group of friends. Thank you for being such a part of our lives.
Hope you are well. All my love, Gina
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