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ATTENTION: This is an archived page and no longer updated. If you have any personal questions regarding battling with acute myelogenous leukemia, please feel free to contact us. About Pastor Aaron On May 17, 2006, Aaron was diagnosed with Acute Myelogenous Leukemia, M5, forcing him and his family into a fierce battle for his life. The initial battle ended in remission but on January 28, 2007, Aaron relapsed and returned to UCLA Medical Center for one long final battle. Monday, April 2, 2007 began the end game--radiation & chemo taking Aaron to the verge death, for the stem cell transplant to graft and regenerate new marrow and blood. By medical wonder and God's grace, this worked. Otherwise Aaron would be in heaven right now. The constant expressions of love and support for Aaron and Natalie has genuinely sustained them and their family. As of July, 2007, Aaron and his family are at home in Ojai settling into their new apartment and day by day gaining strength. While he has a long, long way journey back to full strength, God's generous provision and grace are continuously evident in their lives. Thank you for your interest and prayers for their well being. To read a detailed account, download this Word document:
This website carries occassional updates on Aaron's progress. Visit www.aaronboydston.com for periodic posts from Aaron, Natalie(wife) Ken(father), and Anne(mother). To contact Pastor Lyn directly for more information, call 805-646-1586 or email, fdchaplain@ojai.net What you can do to help: As you have, continue to intercede for Aaron and his family as he is now back home in Ojai, for good!, and regaining strength.
(most recent entries are listed first) Friday, May 18, 2007 We rejoice as Aaron moved from the hospital to UCLA housing(the Tiverton), one year to the day since he was diagnosed with AML. He continues to regain strength following his stem cell transplant. God has blessed Aaron and Natalie and their family with tremendous faith. What a challenge and encouragment they are to us! Praise God and we love you, Aaron & Natalie!! Friday, May 4 On Day 23 from transplant, Aaron was "officially" declared ENGRAFTED. No, has nothing to do with criminal activity!! This is exactly that for which we have been praying! Aaron's body has received the stem cell transplant as his own. Praise God from whom all blessings flow!! And we bless the medical staff who have ministered so diligently in Aaron's journey. You may continue to follow Aaron's progress more closely on www.aaronboydston.com . Saturday, April 14, THANK YOU!! to those who have given directed donations of platelets to Aaron. While he is awaiting signs of marrow grafting, Aaron is developing the anticipated effects of Total Body Radiation--inflamation througout the soft tissues of his body. Mouth, esophagus, intestines, etc. are inflamed. Even fluids are hard to get down. Wednesday, April 11, Aaron's stem cell transplant took place as scheduled today. Please join in prayer for a successful graft. Corrected information: At the time of the infusion of stem cells, the transplant doctor stated that Aaron was receiving the "optimum" amount of stem cells from the umbilical cord source--the same as if he were receiving a transplant from an adult donor. The Blessing of the Cells Be fruitful and multiply, and replenish the marrow. Restore that which is laid waste And reclaim that which the enemy has usurped. Bless, oh God, Creator and giver of life, the many sacrifices and great efforts that have made this day possible. For these sacrifices and these efforts we are filled with gratitude. Surely goodness and mercy shall follow us all the days of our life, and we will dwell in the house of the Lord forever. Wednesday, April 4, Full body radiation began yesterday, two cookings a day. It will take a week to destroy all of Aaron’s own stem cells with the radiation and chemo. The actual day the new stem cells are injected (called Rebirth Day) is slated to be April 11. Yesterday afternoon, Aaron was sitting up and working on his computer--to the good cheer of all observers. Platelets, anyone? See "What you can do to help-UPDATED" to make your plans to donate. It does not matter what your blood type is, YOU CAN DONATE PLATELETS at the UCLA Platelet Donation Center. The importance of Aaron receiving Directed Donations cannot be overstated. Normal procedure at UCLA is to pool(mix) platelets from several donors before being administered to the patient. Over the months, Aaron has had what appear to be allergic reactions to pooled platelets. Natalie and Anne have observed that with directed(platelets from a single donor)platelets, Aaron has a less severe reaction to the infusions. Through a Directed Donation, you may directly help Aaron make it through this time. Thank you to those who have already donated. Tuesday, March 27, Specific prayer requests: That the stem cells will engraft and not be rejected; for protection from the many dangerous and severe side effects; for protection from infection; for wisdom for the doctors and nurses; for strength for all of us; for God’s perfect timing as He is orchestrating every single detail; that God’s mighty power will be seen, recognized and turned into praise from all who witness what is going on with Aaron. We are fully relying on God for healing. We expect to see Aaron completely healed and are waiting (as) patiently (as we can) on the Lord for this! We acknowledge the miraculous healing that God has already done and we know He is faithful to complete what He has started. Thank you for your continued love, prayers and support. Be prepared to be amazed by what God is going to do in the next few months! Monday, March 26, The "Send Off" prayer meeting for Aaron yesterday afternoon was tremendous. More than 50 people representing five churches prayed for Aaron and Natalie. A clear sense of God's presence marked this time of praise and prayer. Everyone present was encouraged by Aaron's clear testimony of "the peace that passes understanding," and the power of prayer. Radiation begins today, Monday. Thursday, March 22 Quick update on Aaron: The last couple of doses of spinal chemo have done their job and no active leukemic cells were found in the recent spinal taps. Aaron met with his radiation team and they will start radiation on his head next Monday to destroy any enemby seeking sanctuary in the folds of his brain. This will take three or four days of outpatient treatment(Aaron and family will take up residence once more at the Tiverton House in Westood). The stem cell search continues and we're still praying for an adult match, through the umbilical cord cell transplant is the back up plan. The actual transplant will begin Monday, April 2 after the radiation and additional chemotherapy runs are complete. Friday, March 9, Aaron has posted yesterday on www.aaronboydston.com Please pray for and participate in the success of the Adult Stem Cell Donor Drive to being held this Sunday at Church of the Living Christ. In a day when christian bashing is an encouraged sport, the Church in the Ojai Valley gives clear witness to the beauty and majesty of the Body of Christ. Please note that the Adult Stem Cell drive is held at Church of the Living Christ. At least 7 other churches in the Valley have publicized and contributed in different ways to this event! Monday, February 5, evening. Yesterday was the final of 12 doses in this round of chemotherapy. An MRI scheduled for this afternoon has yet to happen. Awaiting results of a recent EEG. That the doctors are not rushing in ordering more tests and procedures is a good thing. The lesion on Aaron's brain continues to be the primary point of concern. No platelets administered today. Apparently the transplant being planned is an adult stem cell transplant, not a bone marrow transplant. Age limits for donors are 18-65. The Ojai donor drive is scheduled for Sunday, March 11. If you are unable to donate, you may want to consider contributing to offset the $52.00 lab fee associated with each donation. Financial donations may be sent to directly support Aaron's drive at: National Marrow Donor Program, c/o Holly Collier, Donor Resources 1231 E. Dyer Road, Ste 236 Santa Ana, CA 92705 Check Memo: Donor Center 2, Aaron Boydston. Contributions may also be directed through Ojai Valley Wesleyan Church. Both ways are tax-deductible. Friday, February 2, afternoon. Today is the 8th of 12 doses of chemo for Aaron. He was declared neutropenic(no immune system) today. He is reportedly feeling really crummy. He is given a anti-nausea med for the chemo, but that gives him the constant, forceful, "hiccups from hell," so another med is administered to ease(just barely) the hiccups. Based on yesterday's scan, the tumor/lesion appears a little smaller to the doctor than on the scan taken a few days ago. What is it...tumor or lesion? The doctors seem to be referring to the thing showing on the scans as a "lesion," or a mass of leukemic cells. Perhaps an informal or unorganized, early-stage tumor? When Aaron was in the depths of his ICU struggle(see June 3, below), the doctors detected bleeding on the brain. Somewhat like a bruise that takes time to fade away, the residue of those early bleeds may still be apparent, yet fading. Comparisons of scans taken in May and August, and now Feb. 1, reveal that the residue of these bleeds continue to fade. As noted on www.aaronboydston.com Dr. Paquette and the medical team are of the persuasion that during those early bleeds, cancer cells got through into the brain tissue and "hid out," plotting their present attack. For those in the Ojai area, March 11 is the date for a marrow donor drive(cheek swab for DNA sample) to be held at Church of the Living Christ, 190 E. El Roblar Drive, Ojai. Stay tuned for donor drives in the LA area. Friends of the Boydston family are working on organizing drives in other areas. As Aaron is and will be neutropenic for several weeks, he needs many units of platelets. Please do consider donating(see above). January 30, Tuesday evening. Dr. Paquette has concluded that the mass detected on the CT scan of Aaron’s brain is tumor. The risks accompanying a biopsy outweigh any certainties gained. High dosage chemo has begun. The goals of this round are to attack the tumor and put the leukemia into remission in preparation for the marrow transplant. The process for marrow transplant has begun. UCLA has already completed the preliminary donor search. Of approximately 12 million on the list, 2 potentially matching donors have been found. These will be more precisely evaluated for matching purposes. Thank you for your prayers. Whatever the small odds of you being a donor match for Aaron, this would be a great time to go to www.marrow.org and begin the process to become available as a marrow donor. Yes, it costs $50, but just think of the joy you may bring to someone else by thinking of our joy when the match for Aaron is found. Also, Aaron needs platelets. Anyone may donate specifically for Aaron regardless of blood type. Monday, January 29, late afternoon. Hurry up and wait is the report, it seems. The medical team is concerned that the spinal tap that would readily confirm the diagnosis would also very likely cause the spinal fluid to spread the cancer to other parts of Aaron's body. Antibiotics and platelets are administered. Tomorrow will likely bring the treatment decision. Sunday, January 28, 2007 Blood tests and a CT scan at the Ojai Hospital reveal great cause for concern. Elevated white blood cell counts, blasts, and suspect readings on the CT prompt the ER doctor to call UCLA. Aaron is instructed to report immediately to UCLA Medical Center Sunday evening. Accompanied by the Boydston entourage, Aaron and Natalie returned to Westwood. November 13, 2006 After enjoying a few weeks in Ojai, Aaron re-entered UCLA Medical Center today for his final(4th) round of chemotherapy. Please pray for a speedy strengthening so he can be back in Ojai for Christmas. Thank you for your interest, prayer, and support for Aaron and Natalie in thier journey. In the face of their trials, Aaron and Natalie have been such a blessing to our church family. Thier faith has encouraged us so much. Thank you to everyone who has remembered OVWC in your prayers as well. God has been so faithful. August 3 Aaron has returned to UCLA Medical Center for approximately 3 weeks of isolation following his second round of chemotherapy. Subsequent treatments are yet to be determined. July 16 Sunday Aaron and Natalie were in Ojai over the weekend. Both Aaron and Natalie shared in our worship service of their experiences and God's grace and power during the past two months. What joy and encouragement! Aaron continues to gain strength for the impending treatments. July 12, Wednesday In the meeting today with the oncology team, it has been determined that Aaron will enter the second round of chemotherapy on July 24. Natalie has posted her thoughts on www.aaronboydston.com July 5, Wednesday As Ken has posted on www.aaronboydston.com, Aaron was released from the hospital on Monday and will remain at UCLA Tiverton House(his family's quarters across the street) until he goes back in for further treatments in a couple of weeks. From Aaron to all who have followed his journey over the past seven weeks via this webpage, "I am beyond gratitude for all the love, prayer, and support shown to me and my family. I can't begin to fathom such love..." July 3, Monday midday Aaron continues to gain. His cough has ceased! The gall bladder incision continues to seep. Please continue to intercede for Aaron as he gains strength in preparation for the next round. For notes on Sunday, Ken has updated www.aaronboydston.com July 1, Saturday morning Aaron is able to walk a few unaided steps at a time, a few times a day. The cough continues, although less so. The doctor added a few stitches to the gall bladder incision so it doesn't leak as much when he coughs. As Aaron is administered less pain medication, some of the longer-term effects of chemotherapy are coming more to the forefront. The nausea common to chemo patients competes with his hankering for Wheaties. As Ken succinctly describes, "Chemotherapy kills the fastest growing things the most." So, while the most white blood cells were killed the most, an occasional unit of whole blood continues to be needed to shore up his more slowly resupplied hemoglobin. So today. June 28, evening Aaron continues to gain each day. Today's mystery was the painful/numb tingling in his left arm. The ultrasound was inconclusive. Another first today--Aaron started on real food today--chicken quesidilla--small bites, chewed very well. He sat up in bed for more than two hours today, left his talking valve in more than previous days. White blood cell count continues at around 20,000, indicating continuing stress to his body, ie., inflammation in lungs, as well as healing processes. June 27, Tuesday The marrow biopsy has come back clean--there is, at this time, no cancer in Aaron's bone marrow!! Apparently the blasts present in the test of two weeks ago were holdovers. There will be another round of chemotherapy in several weeks. Yet to be determined is if a marrow transplant will be needed. Xrays & CT scans are revealing "something" in Aaron's lungs. Scarring from the leukostasis? Don't know yet. Aaron's coughing is the current "worst thing," Natalie says. Nearly constant, relief found only in pain meds. June 26, Monday afternoon. Aaron continues to gain strength, although the cough continues. Xrays show some fluid on his lungs. Although testing negative for pneumonia, he is receiving antibiotics as the doctors are concerned regarding atypical pneumonia. Another CT scan was taken; awaiting results. No word yet from oncology as to the results of the marrow biopsy. June 25, Sunday June 24, Saturday June 23, Friday evening Aaron continues to accomplish new tasks or improve on recent firsts. Today, he brushed his own teeth. He can now sit up in bed by himself, though this is an exhausting endeavor. Several thickened liquid swallows a day, painful as they are. That we rejoice with him in such mundane matters speaks of the depth of his illness from which he is recovering. His tracheotomy valve was replaced today with a smaller version, transfering more of his breathing to his own systems. White blood cell count retreats to 21,400 today. Another marrow biopsy was taken this afternoon, results to return in 2-3 days. June 22, Thursday midday In his first full day out of ICU, Aaron seems more content to stay in bed. Communicating with the trach talker takes alot of work, so somewhat quieter, although a fairly persistent cough continues. His swallow test went better than the tech thought it would, so he is able to take in small amounts of thick liquid to begin restoration of his ability to eat and drink. His oxygen supply is on the lowest setting, 28%. June 21 Wednesday late afternoon Aaron has just moved in to his new digs on 10th floor, Room 1041, immediately across the hall from where he began his stay at UCLA. Aaron's stay in ICU began Sunday, May 21. I (Pastor Lyn) just had a few words on the phone with him! Brought tears to my eyes to actually hear him. Voice hindered by the trach, but it was unmistakeably Aaron. Please continue to send mail to 1624 Foothill Road, Ojai, CA 93023, as there is no guarantee that mail sent to UCLA will actually get to his room. Someone from Ojai travels to UCLA several times a week, so cards, etc., will arrive soon. Praise God from whom all blessings flow! June 21 Wednesday morning At some time tomorrow, Aaron will be looking at ICU in the rearview mirror!! He has improved to the point that a "normal" hospital room will do. White blood cell count is down to 29,400, although his hemoglobin is down such as to require a unit of blood. Aaron seems more comfortable, more mentally settled as well, sense humor seems to have survived intact. Continues to oxygenate well. June 20 Tuesday afternoon Pray for Natalie and Anne! Aaron awake is a very energy consuming occupation. Yesterday was exhausting for them, what with his adverse(nearly manic) hallucinatory response to the Valium(no more valium!) Yesterday's sustained heart rate of 160 to 180 is a more settled 115 to 140 today. Today, generally more lucid, he alternates between sleeping and restlessly getting into as much activity as possible--virtually all of his activity involves Natalie and/or Anne as well. Elated when the physical therapist arrived this morning, Aaron is in better shape than anticipated. Sat in a regular chair a couple of times, even standing momentarily on the way from bed to chair and back. Very weak and shaky and not anywhere ready to go home as he continually demands. The trach talker enables Aaron to talk ALOT. Lungs-oxygenation continues at 100% even with his talking. White blood cell count: yesterday, 66,000; today, 55,000. The oncology team will be reassessing the cancer side of things tonight. The "quad," (primary IV entry point) in his right shoulder has become very inflamed and will be removed this afternoon, replaced with a new PIC line in his chest. Almost, but not quite yet to the point of swallowing, consuming thirst is one of Aaron's current afflictions. June 20, Tuesday morning Ken posted an update last evening on www.aaronboydston.com that brings us current. Blessings to you for your love, prayers, and concern for Aaron and his family. June 19 Monday morning Hallelujah! Aaron got out of bed and into a chair at 8:30 this morning! A valve added to his trach allows for weak voice communication. Aaron has been, as Natalie relates, "...talking and talking and talking!" Making up for a month of silence! The greatest share of his communication centers around his immediate needs. He continues to oxygenate well with the speaking valve in place, which bodes well for both the condition of his lungs as well as outlet for pent up words. On rounds, Aaron clapped for the doctors when Ken identified them. Aaron's eye sight is blurry and continues to improve, as does the appearance of his eyes, from the ghastly swollen red of three weeks ago. Aaron repeatedly states he wants to get up and walk. Natalie replies, "Hey, we got you into a chair today, how much more do you expect?!" By 10:30, heart rate 180, Aaron admits back in bed is the better place to be. Amidst the great joy in Aaron's ICU room, the family requests prayer for the Vasquez family, whose husband/father has just been downgraded to "Do Not Resuscitate" in his battle with AML. June 18, Sunday evening Gall bladder removal surgery went well. The doctors do anticipate this will assist in solving the infection/fever mystery. As the afternoon progressed, Aaron seems greatly relieved of pain in that area. June 18, Sunday morning The blood clot filter went in last evening with no problems. Aaron is becoming stronger and more coordinated. Without the concern for blood clots, he wants increased exercise. When the doctor asked him where he was in pain, he took her hand and placed it directly on the area of his gall bladder. Surgery to remove the infected member is scheduled for around 9:30 this morning. June 17, Saturday morning With regards to lung function, Aaron may be approaching where he was before leukostasis caused him to be intubated in ICU. Sinus infection continues. Mild shaking episodes continue, although exercising his arm sees to calm him, as does the pain med for gall bladder. Aaron likes and asks for more exercise, but can't exercise legs at this time because of blood clots. Preparations are being made for the insertion of the blood clot filter. Doctors continue to assess the gall bladder. A hydrascan is performed for this purpose. They seem to be leaning toward tubing and draining rather than removing the thing. Aaron seems more alert and interactive in the morning. Had quite a dose of valium yesterday and today, so he's pretty calm right now. June 16, Friday evening Although leukemia lurks in Aaron's marrow, his blood is still clean. What a joy to see the ventilator readout screen gone to black...disconnected...no longer needed nor in use! Aaron is simply supplied with a 35% oxygen flow to the trach tube. The doctors discovered a blood clot in Aaron's right leg, so a Greenfield-type filter will be installed just below his heart to intercept any such potentially fatal clots. No blood thinners because of the brain hemorrhages. Ultrasounds and other tests determined that Aaron's gall bladder is "distended" and heavily infected. The antibiotics with which Aaron has been inundated for the past few weeks in all likelihood kept the infection from spreading to his blood and body at large, but were ineffective in overcoming the infection there. Later this evening, the doctors will decide whether to remove the gall bladder or tube and drain it. As badly infected as the gall bladder is, his 22,000 white blood count is now more understandable and less alarming...his own system is battling mightily against a huge infection. We truly are "fearfully and wonderfully made," as the prophet stated so long ago. Eric's mother(Eric is a 28 year old with AML), a woman of like faith to Natalie and Anne who holds vigil with them in the 4th floor waiting room as her son battles a fungal infection in his lungs, says, "the one thing we need is visits. Visits from friends and family give us the strength we need." The family needs visits and UCLA Platelet Center desperately needs platelet donations. June 16, Friday, midday The tremor/shaking episodes were determined by the docs to be reactions to medications. So far today Aaron has had only one minor incident. After the nature of what was happening was explained to him, he didn't have the look of terror that had accompanied the first several attacks. Since he is awake most of the time, the incessant tickle in his throat is particularly aggravating, keeping him from resting. However, coughing is fairly minimal. The 22,000-very high-white blood cell count has him feeling pretty crummy as well. The "cancer people," as Anne calls them, say that his wbc count is on the high end of reasonable, given that his body is fighting infection. No cancer cells in blood, so renewed leukostasis is not a danger at this time. Several ultrasounds have been conducted yesterday and today in continuing search for the elusive infections. June 15, Thursday evening A very long day. The shaking episodes continued throughout the day. The doctors again confirmed these are not seizures, as Aaron is able to respond somewhat in the midst of the attack to answer questions. Are they panic attacks? Maybe, maybe not. Perhaps they are an effect of the mix of meds, or perhaps a chemical imbalance in his body. Anti-anxiety med helps a little. He is left weaker after the episodes. But praise God, his lungs and blood pressure holds well during these battles. White blood cell count is 22,000, and is definitely becoming a concern. They are waiting to hear from the cancer doctor on that. Another CT scan of brain and abdomen were done today, results tomorrow. Hector(another young man in his 20's w/AML died today, as did a lady who had preceded Aaron in ICU. It has been a trying day, Natalie sounds very tired on the telephone. Your prayers are so important in everyone's health and well-being. Thank you for your faithfulness and love for the Boydstons. June 15, Thursday morning This morning's call from Natalie reveals a problem. When she arrived at Aaron's ICU room, he was having what she called, "shaking fits." Heart rate, respiration, and blood pressure elevated, eyes bulging, sweats, later calming, then repeated again. The doctor said it doesn't look like a seizure, but Natalie called it, "the scariest thing I've seen yet." A positive sign in the midst of today's crisis is that his vital signs remain strong during these episodes. Oxygenation remains high, indicating his lungs are performing well. Remember just 10 days ago that simply moving his bed crashed his blood pressure. BP is strong during these episodes. Another CT scan is planned for later today. Natalie and Anne also requests prayer for Hector and Eric, the other two 20-something young men in ICU with AML. They are not doing well. In fact, Hector's mother was told last night that there was nothing else that could be done for her son. Please intercede as you are led for them all. June 14, Wednesday evening Aaron continues to gain strength. Using his left hand, he is examining what's left of his hair. While he is awake, he is exercising his legs as vigorously as he can, even to the point of moving himself on the bed. Also he has attempted sitting up. Using his left hand, he has begun to wield the suction wand himself in cleaning his mouth. White cell count is now beyond normal(5,000 to 8,000) to 11,000. This may be his system fighting the infection or going haywire...they're not sure yet June 13, Tuesday, (posted Wed AM) It was one month ago, wee hours of the morning, that Aaron was diagnosed. Yesterday, Aaron continued to sleep well while sedated, cough to the point of vomiting while awake. Mid morning, codiene cough suppressant was administered, after which he slept until late afternoon. When he awakened, there seemed to be less cough. Ventilation through the trach continues to provide an assist only. The fever continued. His sinus infection may be a culprit. The feeding tube which had been inserted through his nose was removed 3 or so days ago and nurishment given through a throat tube. This was removed which may also contribute to less irritation. One significant concern with AML-M5 are lymphomas in the brain/spinal realm. Apparently the doctor's would not be particularly surprised if such were found. However, all CT's and EEG's have come back negative! Praise the Lord! Whenever Aaron surfaces from sedation, he is goes right to "working out." Informed of the necessity of keeping limbs active to gain strength, he regularly is flexing his hands and drawing his legs up to his body. Even in four days, he exhibits noticeable increase in range and strength. Marrow-as related last Saturday, Aaron's marrow does present cancer cells. On Tuesday, there were no cancer cells in his blood, although the doctors do anticipate such to emerge. The next treatments have not yet been announced. On Monday, his white blood cell count(healthy) was half of normal. Tuesday, his white cell count was approximately normal. The good news is, he has his own healthy white cells to help combat the infection/fever. What remains to be seen is to what level will his white count proceed. June 12, Monday evening Aaron was awake for a while today. It seems that whenever he is off the sedative, he begins to cough, even to the point of vomiting. So into the afternoon, the profovol was included and he is sedated and resting. The fever prowls. The sinus infection has been identified and treated with antibiotics. Related? Perhaps, but not conclusively determined. Otherwise a quiet day. UCLA policy is to rotate doctors every two weeks or so. Aaron gets new doctors tomorrow. June 11, Sunday evening The long road back continues. Respiratory and vascular systems appear to be holding steady...other than platelets, no additional blood products needed for several days. Neurological assessment continues, with an EEG performed earlier in the day. While there appear to have been several small "incidental" brain hemorrhages, there do not appear to be any consequences. This afternoon was decidedly uncomfortable what with a few hours of vomiting and diarrhea that concluded later in the evening. As of 9:30PM, Aaron is resting, somewhat sedated. No word today from the doctors regarding further treatment of the leukemia. Saturday, June 10 Aaron has been lightly sedated today. With pulmonary and vascular systems assessed to a degree, today was neurological testing. Among a number of other tests, poking and prodding to assess nerve function; raise one finger in response to request, two fingers was tough; Aaron ends these evaluations with tears of frustration. Aaron's blood pressure and other vitals remain stable amidst all the movement. Ventilation continues with various settings throughout the day. Don't want to push too far too fast. Two CT scans and an MRI today seeking visual clues to the source of the fever that never seems to go away. The doctors conclude he may have a sinus infection and prescribe treatment. The results of Thursday's marrow biopsy come back--blasts, cancerous white blood cells are present. The doctors will determine the course of treatment in the days ahead. ALL of Aaron's network will determine to continue prayer immediately. Aaron's family thanks each and every one who reads these posts and passes them on for your prayer, love and support. They will continue to need each of you for many days to come. God's richest blessings to each and every one of you. June 9, Friday afternoon In the interest of time, let me link you to a current(Friday early afternoon) post by Natalie on www.aaronboydston.com June 8, Thursday afternoon If yesterday was, as Ken posted, "a three step forward day," then today was another two or three step day. Today has been quiet, what with Aaron somewhat more sedated. It seems that all the head nodding and shaking and raising of eyebrows kind of wore him out...so a rest day. Aaron continues in control of his breathing, with the ventilator providing only a positive air flow assist. While platelets continue to be administered, no whole blood has been required for now for two days, hence a reduction of internal "leakiness" it would seem. The communication and interactions of yesterday have apparently allayed concerns the doctors might have had of neurological or other damages due to leukostasis. So, the CT scan that was so needed during the past week to assess the extents of internal damage has been cancelled!!! Now, the focus returns to the first battle--the larger war--the leukemia itself. It was 14 days ago today that the first round of chemotherapy ended. A biopsy was taken today to see if there was any earlier than expected generation of white blood cells(three weeks is average). Results of this test are expected tomorrow. June 7, Wednesday, 10:00pm Even better! During the day, the nagging fever reduced. As Natalie notes today's post on www.aaronboydston.com, Aaron is communicative to the great joy of everyone. Moreover, he was essentially breathing on his own for 3 hours or so, with the ventilator "coming along behind" each breath instead of pushing him. Over the past two days, the nurses have been able to ply Aaron with slight movement with no ill effect. Today, they have been noticeably more aggressive in care, even moving and exercising his legs with blood pressure remaining stable. Continuing deepest gratitude to everyone who has been and continues to intercede for Aaron's recovery. For those readers from the Ojai area, please note the July 1 Aaron Boydston Blood Drive and the July 22 Boydston Family Fundraiser at Lake Casitas. June 7, Wednesday noon The best day yet! Aaron has surfaced from sedation. Anesthesia has been stopped; pain suppression high, so he's still quite groggy. Communicating by nodding and shaking his head. Ventilator/trach is now in support of Aaron's breath pace instead of controlling it. Kidneys functioning well. Blood balancing is an ongoing dance. No CT scan to search for internal bleeding yet. Aaron opened his eyes, looked at Natalie and smiled. June 6, Tuesday morning. Better. The last crisis was Saturday afternoon. Vital signs stable. Aaron continues to be sedated. Oxygen through tracheotomy is 45% or below, with sustainable presure. The pressure wave is looking less sharply mechanical and more like a natural breath. While ramping Aaron up to sustain the move to the CT machine, an ultrasound was taken, results negative. The CT scan may be attempted today. The "Urinator," as referred to so delicately by Ken, has been shut off and removed. In fact, Aaron's kidney's responded so well to the diuretics that he dispensed with too much fluid and had to be rehydrated. Today is the first day since being moved to ICU that Aaron does not have a private nurse. Fewer machines, fewer nurses, all are good signs. June 4, Sunday evening All things considered, a quiet day. After two more units of blood, Aaron's hemoglobin level rises a little, something that hasn't happened with previous transfusions...an encouraging sign. Though still needed to assess the damages and suspected areas of internal bleeding, the CT scan was not attempted today. Still considering the tracheotomy for tomorrow. Aaron is sedated just below the discomfort level. Please pray for Michaela and Christopher, as their longing for Daddy--each in their own way--becomes more acute. Here at Ojai Valley Wesleyan Church, a most wonderful expression of the Body of Christ occured this morning. As you may imagine, our church has been scrambling to respond to the challenge of Aaron and Natalie's absence from our youth ministry for the coming months. Ryan Connell, a longtime friend of Aaron's and youth pastor at Church of the Living Christ(AG) has sent two of his youth staff, Tommy and Vanessa Wilson, to us to lead our youth ministry for the summer--including summer youth camp! The Wilson's began their ministry with us today. They are delighted to be able to serve God and our youth in this way for the summer. Please pray for Tommy & Vanessa for God to give them a special grace to minister in a setting with unique challenges. We praise God for His provision for our need and bless CLC for their generosity! May the Lord return to them hundredfold their blessing to us and our young people. June 3, Saturday evening Still in the woods. Due to the damage accomplished by the leukemic white blood cells, Aaron has a degree of internal bleeding which the doctors sought to more accurately assess today. To do so, he needed to be moved to have a CAT scan performed. Moving him and his bed caused his blood pressure to fall to such an extent that the risk was deemed to great to continue, so, back to ICU. June 3, Saturday morning Last night was quiet. The paralysis drug was discontinued yesterday at noon, and Aaron continues under heavy sedation. Vital signs stable at this level. Holding pattern for now. June 2, Friday evening Slow progress. Into the afternoon, Aaron's vitals have evened out somewhat. After the blood pressure spike of the morning, it went too low; stopping dialysis for a time helped to get it back up. Ventilator settings are adjusted almost hourly, seeking the most stable, sustainable advances in Aaron's respiration. The more medically knowlegable among us will understand when the doctors state that Aaron is within the Acute Respiratory Distress Syndrom protocols. Even with the instability of the last two days, he was not as low as Tuesday and Wednesday of last week. Those of you who know Aaron's father, Ken, will appreciate his wry assessment, "As sick as he is, he's in pretty good shape." Ken's narrative on www.aaronboydston.com is current through yesterday. Jaime, the UCLA Platelet Center coordinator knows Aaron on a first-name basis. If a trip to Westwood for a donation is a possibility, Jaime(contact info on What You Can Do To Help) would be delighted to visit with you on Monday to get you going. June 2, Friday morning Apologies for the lack of an evening update yesterday. Today, Aaron looks a little better. Fever down to 101. Lung and kidney monitor readings continue to be choppy as the proper balances are sought. The meds applied yesterday for low blood pressure seem to have worked too well, now the doctors are attempting to lower his bp. Apparently the doctors believe his lungs will need assistance for some time as they are discussing a tracheotomy for Monday. The first team of doctors, Bajaj and Lee are on to other assignments. The new doctor(s) are less communicative which tends to increase frustration for the family. Thank you for your continuing intercession. June 1, later Thursday morning Improvement. Oxygen back down to 60 % from 90%, ventilator pressure reduced by half, blood pressure and Ph improved. Paralyzed, vital signs are strengthening. Aaron's destabilization may have been due to multiple factors. The effort of resisting the ventilator tube for a day as he was nearly awake, a temporary mucus blockage in the ventilator tube, adjustments in settings may have taxed his abilities too stringently. Decreased lung efficiency may have affected his blood as well. Whatever the causes at noon today it appears Aaron is coming through this setback well, although he is not as strong as he was yesterday morning. Thank you for your prayers. June 1, Thursday morning Not a good day so far. Fever continues. During the night, Aaron's vitals destabilized. Blood pressure so low as to require meds to increase. Re-induced paralysis, so ventilator is once again in complete control of respiration. As you have, please continue to intercede for strength for Aaron and wisdom for the doctors as they seek to stabilize Aaron's condition. May 31, Wednesday morning The fever has returned, 103; no evidence of infections, all cultures negative. Aaron is increasingly restless with the ventilator. Continued oxygenation is necessary. As we pray for healing, pray also for wisdom for the doctors as they address Aaron's lung issues. May 30, Tuesday evening A better day yet. Stability continues to progress toward recovery. Oxygen continues at 40%, slightly less pressure; ongoing effort to work with his own breathing reflex. While lung function seems to be improving, the doctors have not yet ventured their opinion on the extent of lung damage. Kidneys working well while still on dialysis. Less sedative. While Natalie was with him this afternoon, Aaron surfaced momentarily. The nurse asked him if he felt any pain. Aaron moved his head, "No." Gag reflex because of breathing tube...Aaron seemed agitated...Natalie became agitated...more sedative...Aaron not agitated. Keep praying for Natalie J! Praise God that Aaron was readily responsive! As you have, intercede for him. Only God and Aaron know the extent to which he is or is not aware of his circumstances and the fear and uncertainty that may be crowding him. May the perfect peace of God that passes all human understanding guard and keep Aaron, heart, soul, mind, and body. May 30, early afternoon Information has been forwarded to me that UCLA has a shortage of platelets currently because of the holiday. If you would like to donate and be willing to drive to UCLA/Westwood please email fdchaplain@ojai.net and the info & attachments will be forwarded to you (contact information, time it takes & other requirements, directions to the donation center). There are certain requirements and your blood type is irrelevant. It is possible for your platelet donation to go directly to Aaron. May 30, Tuesday morning
Although the steps may be small, Aaron's improvement continues. Oxygen was temporarily lowered to 30% during the night, back to 40% this morning. Mechanical breaths per minute reduced to 30 from 35; pressure reduced again. Doctors are speaking of "improved lung elasticity." Paralysis drug stopped at noon yesterday, Aaron is being maintained at the upper reaches of sedation; more involved in his breathing, even at times "bucking the vent," ie., gag reflex, so a tad more sedation. Doctors are discussing extubating(opposite of intubate) Aaron in the next few days. The word on the street is that the winner of the family wager(day/am or pm that Aaron is extavated) is buying dinner. While no longer critical, dialysis is being continued...the doctors don't want too much change too soon. Concerns: low grade fever returned; blood Ph continues to need attention. This morning's doctors meeting about Aaron was the shortest yet. The family really appreciates personal visits there at UCLA. May 29, Monday evening Today was in Ken's words, "A nice, easy, no excitement day." Medical/mechanical support for Aaron continues to be cut back. Less paralysis drug; oxygen to 40%, with a little less pressure, although ventilator breath rate continues at 35/minute. Evidence points to improvement in Aaron's lungs. The doctors discussed today, but decided to delay taking him off dialysis. Ken's analysis of the doctors' statements are that Aaron is "on the verge of moving from stability to recovery." So far, Aaron's blood needs have been quite moderate, so the hospital has not called for specific donations(although RC & UBS would certainly welcome any general donations!). For future reference, though, O neg. The docs are making no statements, however, of when Aaron will be awakened or off the respirator. At Natalie's direction, today's lunch was a Praise God! party. May 28, Sunday evening Late this afternoon, Aaron's family saw the doctor again, who reported some very encouraging news. While dialysis is continuing, Aaron's kidneys are eliminating fluid without the help of diuretics. His heart compression is improving; blood Ph is balanced without the addition of baking soda; and less fluid is permeating in his lungs. All in all, the doctor said these were significant improvements and that Aaron may be in the approach to "turning the first corner." It is still too soon, however, to venture when he will be brought out from under sedation, or the extent and permanence of lung damage. Nonetheless, we'll take every one of these reports we can get, right?! May 28, Sunday afternoon A better day yet! Oxygen holding at 60%, ventilator pressure reduced by half, with his vitals holding steady. Plans this evening to reduce breath rate from 35 to 30 per minute. Doctors also plan intermittent reduction of paralysis meds to see if Aaron's body and ventilator can work together again. Dialysis continues(and will for several more days) and reduction in fluids has helped his lungs noticeably. Doctors are considering removing the SWANS/GAN unit(probe in aorta which gives real-time BP/flow/temperature readings), indicating significant confidence in his progress. The doctors continue to emphasize that Aaron has an extremely long road ahead of him, but PRAISE GOD, IT LOOKS LIKE HE'LL BE ON THAT LONG ROAD! Wednesday and Thursday they wouldn't have been that confident. God bless every one who has given of their time and themselves to intercede for our dear brother. May 27, Saturday evening Aaron's vital signs remain stable throughout the day. Dialysis to assist his kidneys continues. Induced paralysis to aid respiration continues. No new negative developments. May 27, Saturday morning Aaron's stability improved overnight. Dialysis continues, more fluid removed. No unexpected problems, the doctors are keeping ahead of the issues. It will be several days before they venture any statements regarding the longterm viability of Aaron's lungs, although they do say this morning that there may be a "hint of evidence of healing there." The nurses have not yet attempted to move Aaron in the bed at all. Symptoms of pneumonia are decreasing. No changes are planned today regarding major procedures, ie., sedation/induced paralysis, mechanical respiration, dialysis. All in all, the numbers(see Ken's narrative on www.aaronboydston.com of Thursday for "medicine by the numbers") are pointing in the right direction. Aaron's family is encouraged. Thank you for your continued intercession. Blessings to all who, near and far, are supporting them. May 26 Friday evening After the low of Wednesday and Thursday, developments today have continued to provide encouragment, even as Aaron continues sedated/paralyzed in very critical condition. Positive: oxygen stable at 60-70% and the pressure required to get it into his lungs reduced. No apparent worsening of lung condition. Dialysis continues, 3 litres of fluid removed. Worked throughout Friday to balance Ph of blood, reducing acidity. Planning a holding pattern of sorts for the night. Yesterday's paramaters were not enough for successful living. Today's parameters are. Thank God for the doctors and nurses and the amazing medical technology, and praise to our Great Physician who is working with, through and over all for Aaron's life and health. May 26 Friday morning Relative to yesterday, today is a better day. Within the first battle--leukemia--last night wrapped up the first round with white blood count of 0. Within the second battle--leukosis, the effects of the accumulation of massive amounts of white blood cells in his organs--Aaron continues to fight for his life, with his lungs being the battle scene. During the night, his vital signs stabilized, with oxygen at 70%, down from the 100% of the last two days. In addition to continued sedation, paralysis was induced during the night to cease his autonomous breathing reflex and give his lungs a complete break. The doctors have described the damage to Aaron's lungs as "significant." Too soon yet to know its permanence. Temporary kidney dialysis begun(not due to kidney failure) to assist with reducing fluid levels, eliminating toxins and dead white cells, and regulate body chemistry. Ken will be updating his narrative soon. Check back. Thank you for your continued intercession on Aaron's behalf and for his family. All have been lifted immeasureably by the outpouring of love and support. They thank you from the bottom of their hearts. May 25, Thursday evening Today has not been a good day for Aaron, as it has been about the same as yesterday. Fully sedated, breathing function completely by ventilator. 103 temperature may be his body fighting the toxins, although the staff continues to search for any infections. He continues in grave condition. I will refer you to Ken's account on www.aaronboydston.com which is now current through yesterday. It is not easy reading. 1st round of chemo will be completed tonight. The docs will then begin to decrease fluid retention, with which they hope Aaron's lung function will strengthen. May 25, Thursday morning Aaron's fever continued throughout the night. Cultures negative, still seeking cause of fever. White Blood Count is 0. Final chemo of 1st round began at midnight and will continue through midnight tonight. No report of any other organ damage. PTL! Family is tired. Thank you for your continuing intercession on their behalf. May 24, Wednesday afternoon Rollercoaster. Last night, Aaron spiked a 104 temperature. By mid-afternoon today, its back down to 100. Docs are not sure what is causing it, no infection seems to be present. Vital signs stable, although they had to re-elevate his oxygen concentration 90%. Docs also seeking reason for some blood in urine. Natalie had 30 minutes with him this morning, but the rollercoaster of emotions is taking its toll on Natalie. Intercede accordingly as you are led. May 23, Tuesday evening Sedated in ICU, Aaron's vital signs continue to be "good." His stomach tolerated a small amount of nourishment through the tube. Oxygen concentration is down to 70% with blood levels maintaining well. However, too soon to tell the extent or permanence of the lung damage. And praise to our Great Physician, Aaron is now through the critical 48 hour window in which the doctors anticipated any further major organ crisis/damage to appear if it was present. Onward with the primary treatment: Chemotherapy to suppress the marrow. As the marrow regenerates in a few weeks, biopsy to determine whether cancerous or clean. If cancerous, at that time, marrow transplant or other treatments will be determined. May 23, Tuesday afternoon Aaron continues in ICU. Natalie was with him for an hour this morning. Vitals good, stable. Fever that he had had from the beginning broke early this morning. While there is an undetermined degree of damage to his lungs, he currently has no infection, pneumonia, or virus there. Sedation continues to keep stress off his lungs. White Blood Count is 700. Feeding tube inserted. Natalie found humor in that on the day people were fasting and praying for Aaron, he was getting to eat! May 22, Monday evening Aaron continues in ICU(4th floor), vitals stable. Chemo appears effective, with his White Blood Count down to 2,000 from over 200,000. The RV is in place for the family nearby the Medical Center. Praise the Lord! Aaron continues in critical, but stable condition. May 22, Monday morning
Two battles being fought. 1) The leukemia itself, AML-M5, which is producing very large, sticky white blood cells; and 2) the accumulation of those cells in the body
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