Tag Archives: bone marrow transplant

Mar11

Glimmer

Posted on March 11, 2015 by Conglomeration of Joy

Delayed Gratification. Joy Set Before Me.

You can endure a lot…if, if you see a glimmer of light. If you can grasp onto that shred of hope. But if it’s all for not, if nothing will come of all your straining, all your loss and sacrifice, it’s ever so much harder to press forward.

But…you catch that glimpse…you sense before you that the light is coming and it invigorates you to lean into the endeavors before you.

I don’t know if Allistaire will make it out of this alive or not. There is so much good I can easily imagine if she lives. There is also good I can imagine if she dies. If she dies, I pass over that line. I enter a territory I have never yet had to tread. If she dies, I will dwell there, with them, with Beth, Merle, Rachel, Julie, Devon, Ryan, Darliss, Janett, Shannon, Susan, April…I will share in their company and that would be good and I would have an understanding that at this point is only imaginings. I cannot let go of my sweets but it hurts my heart to not be able to draw yet closer to them in their places of pain and hope.

For now, we are here, here in the dark but with a glimmer. For me the glimmer began with remembering the statement that, “I would be flabbergasted if your insurance approved this transplant.” This was voiced by a woman who has been integral to coordinating all the details of transplants for years. And you know what, Blue Cross Blue Shield of Montana has approved Allistaire’s transplant. Flabbergasted has happened and it was a sweet, tangible reminder that the “unlikely,” has happened so many times for Allistaire – good and bad. What shouldn’t have been, has. So if the doctors say she probably won’t recover the needed heart function, well, they could be right, but they might not. Flabbergasted can happen. It is a reminder that God will do what HE will. There is SO much to tell, so much in fact that I’m sure I will fail to get it all down.

When did the shift begin? On February 15th Allistaire finally showed evidence of her bone marrow recovering after 38 days at zero. Then there was a solid week of serious pain as her white blood cells flooded her gut and got to work on healing. Sometime in the few days preceding our especially difficult care conference, as her ANC continued upward, her pain began to subside to the point that she now needs only one dose of pain meds every several days, if at all. On the day of the care conference something wondrous happened. Her BNP (Brain Natriuretic Peptide), dropped below the terrifying lab value of greater than 5000. This has been its approximate path: Over 5000, 3800, 3200, 4000, 2600, 1400, 972, 1040, 1320, 1090, 2350, 552, 1100, 749, 1070. The big blip back up to 2350 was most likely due to getting blood the day before on her birthday. A transfusion of blood resulted in a big increase in fluids and blood is a very heavy fluid so while the heart loves blood, the big extra dose caused a bit of distress in that narrow window. I cannot convey to you how glorious it is to have that wretched number dropping! I have no idea if it’ll keep going or if it will settle at some point.

Another development is Allistaire’s overall activity and joy level. The girl is coming back to herself! I remember trying to get Allistaire out of her bed after a week in the PICU to have her walk to the door of her room – it was such a great and painful effort. In reflecting back to the days after Allistaire’s transplant and being in bed so much, I knew the sooner we could get her walking again the better. The scope of my abilities to directly help Allistaire through all of this are so limited, but I knew I could help her get moving. So what began as one walk a day from the bed to the door turned into a lap from bed to couch to door and back to bed, three times a day. We kept increasing the distance and the frequency. Thankfully, the Infectious Disease doctors approved the same activity plan she had up on the Cancer Unit which meant we could finally leave the room as it was getting absurd to try to make progress within the confines of her small room. We are now up to a lap around the PICU and Cardiac ICU five times a day. That is equivalent to a half mile a day. She giggles now. She jokes with the doctors and nurses. She plays around in her bed and kicks and seems to have no limitation on her movement.

Last week Dr. Yuk Law, head of the Heart Failure team, was our attending cardiologist. One of my greatest joys has been seeing him watch Allistaire with a look of disbelief on his face. My impression of him, which has been supported by that of others, is that he is a very even keel man. As he watched Allistaire frolic in her bed, he pointed out that she was moving a lot. “Well, yeah,” I thought,”that’s Allistaire you’re looking at.” I then went on to tell him about her progress in walking around the Unit. With a look of surprise, he asked me to clarify that she was, what, out of her room, walking around? Yes, yes, around the unit five times a day, I reiterated. You see, she is literally the only person in the whole ICU who is walking around. He wanted to know if she got out of breath. “Not even a hint of out of breath.” He said he was astonished. He watched to see her as she finished a lap to verify my report. With a dropping BNP and such incredible physical activity, he discussed the possibility of trying to wean her Milrinone, but he wanted to wait for Monday’s echocardiogram.

Flabbergasted. Astonished.

On Thursday, March 5th, two weeks after her last discouraging CT, Allistaire had another. This CT would look for fungus in the sinuses and chest with the hopes that if it were not there, we could stop the Micafungin, which is a very broad spectrum IV anti-fungal, and return the prophylactic, Fluconazole. They would also look at her gut to see the state of Typhlitus. If she was all healed up, they could finally end over 50 days of broad spectrum antibiotics. The CT showed that the sinuses were completely normal and clear. Moving down to her chest, it says the “lungs are clear. Previously noted predominantly sub pleural groundglass opacity and consolidation has resolved. The proximal airways are patent. No pneumothorax or pleural effusion.” Previously noted small right pleural effusion from 2/20/15 has resolved.” Did you get that? Things look normal. Issues have resolved!

It goes on: No enlarged lymph nodes (a common place for her cancer). The liver, spleen, gallbladder, biliary tree, pancreas, adrenals, kidneys and bladder are normal. No pathologic mass identified. Previously noted multifocal bowel wall thickening involving the colon and rectum has resolved. The bowel is now normal. The appendix is normal. What sweet relief! Her whole gut has totally healed, there is no fungus and you know what, even previous evidences of heart failure in her lungs and liver were not mentioned because they are not there! I was so elated! This also meant two more IV meds are done. Over the preceding week, we had begun to transfer IV meds to be given by mouth as she could handle it. As of today the only IV meds Allistaire is on is Milrinone and Lasix. Of course, she takes a total of 20 doses of meds by mouth each day, but a number of these are just preventative.

The other big development is that Allistaire has begun to eat. I joyously charged into Pagliacci Pizza last Monday evening to declare that my girl, who had not eaten in nearly 60 days, wanted cheese pizza and lemon San Pelligrino. She ate with a zeal of old. Then she threw it all up. Too much too fast. Over the last week she’s struggled with nausea but continued to have an appetite, even requesting a hotdog the other morning before 8am. Tonight’s request is chicken quesadilla, rice and chips from Chipoltle. The nutritionist was able to reduce the calories in her TPN (IV nutrition) and get rid of her lipids all together. Over the weekend, Dr. Law decided to have the team completely cut the TPN given that oral fluids have less of an effect on the heart than do IV fluids. I won’t deny that I was surprised and frustrated by this rapid adjustment. Getting Allistaire to eat is a time-consuming and often very challenging, stressful process, especially when it all ends up in being thrown up. Nothing is more defeating. A typical meal requires 2-3 hours of tedious intermittent bites and prompts to drink. By last Friday she was probably taking about 500 calories in a day with a total daily goal of 1,200 calories. So much of it is hoping Allistaire won’t be over nauseous (she is on anti-nausea meds she gets every 6 hours) and strategy – what will give her the most calories that she can also keep down. (By the way, this is not a request for input on this matter. Believe me, I’ve had countless conversations, and innumerable attempts at a variety of options. We are three plus years into this food battle and I admit, advice at this point is not welcomed.) Yesterday the girl got 1,300 calories in. I was amazed!

Today we’ve had to make a few food adjustments due to an “acute kidney injury.” As a result of all the Lasix, which pull off fluids and are thus quite hard on the kidneys long-term, and an electrolyte imbalance, her BUN (Blood Urea Nitrogen), Creatinine and potassium levels have crept up and were quite a bit too high today. Because they monitor all of these levels daily, the doctors are able to catch issues early and make adjustments. A number of meds were held this morning that impact potassium levels and fluid load. Also, I am not giving her milk or orange juice today, both of which are high in potassium. They retested labs this afternoon and thankfully her numbers have trended down now nicely. Most likely she can resume her regular meds tomorrow.

The issue with her kidney’s also prompted a hold on the planned wean of Milrinone, originally set to begin today. Allistaire had her echocardiogram on Monday. It was a bit deflating. Dr. Hong, the attending cardiologist this week, said that while the EF (Ejection Fraction) is up to 21% from 11%, she says her heart looks about the same. We had a lengthy conversation which included looking on the computer at her echo from back in December when her EF was 65%. Of course there was a marked difference. Dr. Hong seemed cautious to not be too optimistic and over-promise. This was where we had a bit of tension. I’m not looking for grand results in two weeks time. I’m looking for a shred of hope that shows she is going in the right direction. I’m looking to take stock of every victory no matter how small. I know it is no guarantee of what will come, but I have to live out these days and I need that fuel of hope to keep me going. Dr. Hong did say that her right ventricle, which had looked fine until the last echo two weeks ago, had improved, as had the function of the mitral valve. They haven’t recovered fully but they are better than they were before. Hopefully this recovery will in turn aid the recovery of the left ventricle. The cardiologists will meet today to discuss med changes including the possible addition of another med and the likely wean of Milrinone, set to begin tomorrow.

I have never felt so weary, so utterly tired. The planned wean of Milrinone will be incredibly slow this time. Last time they weaned from .5 to zero in a week. This time they plan to wean .1 per week, starting at .75 which means a seven and a half week wean to zero, five times slower than before. This is wise because we all want her body to have the very best shot at successfully coming off. Yet, as I calculate out the very, very best scenario it would be three more months until transplant, which assumes the ability to keep her cancer in remission, a successful wean and sufficiently improved cardiac function. This is a lot to assume. Nevertheless, if you add these three months to the 100 days post transplant one is required to stay in Seattle for, we’re looking at a minimum of six more months. I’m packing up my wool sweaters to send home with my mother-in-law, JoMarie. But I’m wondering if the seasons will turn again and again with us still here and I may need to wear them again in this place. Daunting. So very daunting.

Friday was Allistaire’s 5th birthday. It was a crazy, whirlwind of a day, fun and emotional. The point of celebrating a birthday is to remember back to that day your beloved came into this world and to express thanks for each year since. I could never have imagined when Allistaire was born that this fight against cancer would exist, much less so consume her days. Four out of five birthdays have either been in the hospital or under the shadow of treatment. We did nothing for her second birthday but be glad to be home after leaving the hospital the night before at 11:30pm when her last dose of chemo for that round had been given. Her third birthday was spent in the hospital soon after her first relapse, just the two of us. Her fourth birthday was a grand event at home, only two days after she had her Hickman line removed at Seattle Children’s marking the end of treatment but with the looming fear and wonder of what the coming year would hold. For me Friday was a day to be in both wonder and in sorrow. It is wondrous to me that her life has been extended over and over and she is here with us for another birthday. And my heart is heavy with grief that her little girl years have been so constrained. I think of the lives of other little girls and the contrast is so stark – like a sudden punch in the stomach. I am so keenly aware of the fact that this could be her last birthday, that her life ever hangs in the balance. Tears threatened throughout the day.

I also nearly cried as we walked into her room that afternoon. A sweet woman, Libby, from Soul Illuminations, had volunteered to come and take photos of us so we had headed down the hall to the Quiet Room where the visuals are better. When we came back to the room, the bed had been shoved to the far wall and the room was full of joyful faces eager to celebrate Allistaire and see her delight. Sarah from PT (Physical Therapy) came with her parachute and a group was bouncing a beach ball a top the parachute. There was music and clowns and cakes and too many presents and just a whole lot of love. Again I had to hold back the tears – that she would be so loved, so celebrated, that so much planning by the hospital staff would go into making this day special for her, well, it was overwhelming in such a beautiful way. And it was a special joy to have Solveig and JoMarie surprise her for her birthday. Ah, two sisters giggling. There is nothing better, nothing.

When Allistaire was two weeks old I took her to see Caroline, her great-grandmother who was in a nursing home. We arrived to find Caroline in her group time with fellow Alzheimer’s patients. Two of the women asked how old Allistaire was. I told them, “Two weeks.” “Wow, just two weeks,” they exclaimed with ooos and sweet faces of cherishing delight. A minute later they would ask the same question, which yielded the exact same level of surprise and delight. This went on and on. Same question. Same answer. Same response. It was comical in one sense, but I realized that this question yielded a wonderful answer. What about when these same women asked about their husbands who had likely passed away. They had to meet the news of their beloveds’ death over and over, with the same shock and sorrow. It’s not quite the same for me but there is a fair amount of similarity. There is no clear course. I look at a little girl so full of life and joy and exuberance and some neon sign next to her head flashes, “probably not going to make it, probably going to die, don’t get your hopes up.” I look at this test result and hope. I look at that test result and fear the worst. One doctor emphasizes, “kid’s are resilient, they surprise you all the time,” and another keeps a straight face and offers no hint of optimism. I feel flung to and fro, bashing up against this likelihood of death over and over as I swing back around. It is not just a day-to-day existence here but a reality that from morning rise to evening’s setting sun the whole nature of things can change.

No matter how normal this has all become, no matter how cheerily I decorate her room, I constantly meet with shock the dark presence in the room. But I’m looking for joy, joy in the day and joy to come. I am fixing my eyes on the God who counts the number of hairs on my head and who determines each day, hour, minute, molecule, ion. It is His to choose where these days lead. It is His tale to tell. And what is my life anyway? Is it so very essential that I check the boxes I’m told relentlessly make up a good life? My life doesn’t fit into those wee constrained boxes and neither does my God. His ways are not our ways and there is thrill, there is invigoration, there is anticipation, there is leaning into these days. I am on the look out for what He will do. I am on the look out for my God who gave me this small, loving, beautiful, hilarious, strong, feisty, wondrous girl. Thank you Father for the abundance you have given. Thank you for better days and for a glimmer of light.

Feb27

Bewilder

Posted on February 27, 2015 by Conglomeration of Joy

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Bewilder. Is that the right word? I startle to find myself out in these woods, not sure where I am, sometime between night and coming day, or is the day done and night approaching? I am out here, cast in the land between lands, this already and not yet, ever tension. But she is so alive?! “So to summarize,” I say when there is nothing left to say, “You don’t believe she will make it?” All heads nod.

I didn’t want to cry. I didn’t want to have my heart tearing out of me be seen as with audience by these eight. I fought the tears knowing the all consuming fatigue they bring, all the cells of my flesh flattened under crushing weight, silent and unrelenting. I studied the tree tops beyond those panes of glass, never seeing them. “Her heart could suddenly stop. She could have an arrhythmia.” Gutteral cry, “Oh God.” It was not hard for the images of doctors swarming her to come vivid. Throughout the day and night the speaker in the hallway, the speaker in the room declares, “Rapid Response Team, Code Blue,” always joined with the location. “Code Blue Ocean 8 in front of the lab.” “Code Blue River 5 room 307.” I have seen the flood of doctors and nurses responding like blood gushing a wound. Instantly I can hear the words, “Code Blue Forest 6 room 321,” and this time it would be my sweet girl. I know if it came to this it would be the end. While they might be able to bring her temporarily back, there would ultimately be no return, no recovery. But yes, yes, yes try to bring her back because I want to gather those who have so cherished her. I want that time to surround her with faces who hold her dear. I want that chance to say good-bye one last time. I want to blow her kisses. I looked into the cornflower blue of her eyes and mourned that the one beautiful thing I clearly gave her might be lost.

Dr. Kemna, the cardiologist does not think there is a very good chance she will be able to recover the degree of heart function necessary to qualify for transplant, that far off ejection fraction of forty-five, if she can recover at all. At some point in the future, they will try to wean her off the Milrinone. Her ability to successfully wean off Milrinone or not will be an indicator of the likelihood that her heart can recover some function. So while Milrinone does nothing to help the heart recover, whether or not it is needed to function well in terms of things like breathing and profusion to the rest of her body, will signal how severely her heart has been wounded or the possibility of resilience. If she is unable to go off Milrinone, it may be possible to move her up to the cancer unit, or even possibly to Ronald McDonald House, but these moves would solely be to maximize quality time with her. It would foretell the end. If she can successfully wean off Milrinone she would continue on oral heart meds and consistent monitoring to see if there is any improvement in her heart function.

All efforts to improve her heart function is dependent on the resource of time. It will take time. The question is whether or not her cancer will allow such time. As noted before, we are working off the assumption that she is in remission given that she started this round in remission in her marrow. The extremely poor condition of her heart continues to make sedation unnecessarily risky. The PET/CT scan can physically be given without sedation, it is just a matter of whether or not Allistaire can stay still enough for the 45 ish minutes it would take to do the scan and get a good image. She can certainly lay still for the very brief 30 seconds a CT requires and so we may start with that. Dr. Gardner said the down side of CT is that it can show lesions that are actually healing rather than solely active leukemia, with no ability to tell the difference on the image. The advantage of the PET scan is that it shows the active metabolic cancer. Thankfully, a PET scan carries no risk as it is not a form of radiation and so the worst that could happen is that we try it and it doesn’t yield a clear image because Allistaire doesn’t stay still enough. For now a bone marrow biopsy is not an option, but they will be drawing peripheral blood upon which the pathologist will conduct Flow Cytometry. While it will not be conclusive, it will be comforting if there is no leukemia present which would in turn more affirm the view that she is in remission.

Without any further treatment, Dr. Gardner says Allistaire only has about a 10% chance of staying in remission. I can’t imagine doing nothing further. So once her ANC reaches 1,000 she will begin getting Azacitidine. Today her ANC is 348. Neither Clofarabine or Decitabine are options because they suppress blood counts too much. At this point, any further bacterial or viral infection for Allistaire could easily and immediately tip her heart over the edge. She has no reserve. The hope is that Azacitidine will be enough and have the same success it did in the seven rounds she had after her bone marrow transplant. Another upside is that it can be given outpatient. If she still has chloromas, the solid leukemia seen on PET/CT, there is the possibility of doing focal radiation which would likely be very effective. However, radiation is given under sedation for someone as young as Allistaire. You must lay completely still in the exact position they place you in. Radiation is incredibly precisely targeted. A styrofoam form was created to lay Allistaire in the last time she had radiation and three permanent little dots were tattooed on her body in order to line everything up with the rigorous calculations done in preparation. Allistaire would be left totally alone in that room with the foot thick lead door. I really don’t know if she could do it. If Allistaire is not in remission, every single thing changes. If she is not in remission, she is done, done. There is nothing left to offer her because anything that has the potential to get her back in remission would be far too harsh for her body to endure.

One other possible option, which like transplant, requires substantial improvement of heart function is the WT1 trial with the modified TCRs being conducted by Fred Hutchinson Cancer Research Center. (Click HERE for details on this trial) This trial requires that Allistaire’s ejection fraction be 35 or higher. Typically the cell manipulation is done with donor cells left from a stem cell transplant, however, in Allistaire’s case they could ask the donor to donate cells directly for this trial. The scientists would engineer the donor’s T-cells to specifically target the WT1 protein expressed on the surface of her leukemia cells and in turn destroy the cancer cell. Check out more about TCRs (T-Cell Receptors) at Juno Therapeutics some of whose scientific founders include Dr. Phil Greenberg at Fred Hutch and Dr. Mike Jenson at the Seattle Children’s Ben Town Research Center.

The other topic that was discussed was the potential use of VADs. The other day when I logged onto the Seattle Children’s Hospital Family Network, their website popped up and the main page was featuring the expertise at Seattle Children’s and extensive availability of a variety of VADs – Ventricular Assist Devices. My face lit up with possibility and terror at such a possibility, such an extreme measure. It said that VADs can be used for patients with heart failure to allow their hearts to rest and recover. I immediately tracked down the cardiologists and said I wanted to discuss a VAD as a possible option for Allistaire. Apparently Dr. Gardner had the same idea and discussed it with the cardiologists before our care conference which occurred yesterday afternoon. The short of it is that a VAD is not an option for Allistaire. You cannot go through a bone marrow transplant with a VAD. The context in which they are successfully used in the short-term is for patients whose heart has an acute hit, from a virus for example, but was previously healthy. The VAD can indeed give their heart the rest it needs to recover and the relative health of their heart can also recover from the actual damage done by implanting the VAD. In Allistaire’s case her heart is exhibiting the cumulative effect of all the harsh chemo she has endured. It has been compensating a very long time and likely cannot bounce back. A VAD in her case would only be possible as a bridge to heart transplant, which as one with cancer, she is not eligible for. The thought of a heart transplant is insane to me, insane. But I won’t deny that if she were in this plight on the other side of her bone marrow transplant, I would not let up, we would walk forward to the transplantation of her most core organ. The cardiologist noted that in cases of chemotherapy induced cardiomyopathy, it doesn’t usually show up for another 10-20 years. That sounds like a long time. But really, Allistaire would still only be 15 to 25 years old with a heart that has failed.

It is uniquely woeful that the very treatment that has extended Allistaire’s life these past three plus years is what has so damaged her heart. Yesterday the cardiologists wanted an X-ray of her lungs to look for edema. They put the little lead heart on her groin again and it was like a knife twisting in me. In the care conference I found myself internally crying out, “You’ve already taken so much from her, so much…now this too, this?!” I’ve already yielded her ovaries. I’ve already acquiesced to the reality that TBI (total body irradiation) would impact her cognitive abilities. I know her growth and bones have already been harmed. She has already lost so many days as a child, and now her heart too will be gouged out? It is like cutting off someone’s leg and saying, be happy, you still have one leg. And then, oh wait, we must cut off that other leg and an arm. Limbless, you are thankful to be alive. But you have been harmed you see? You have been ravaged. The exchange for your life has cost so very much. But it turns out you cannot live without your heart.

I asked Dr. Brogan, our main ICU doctor, if he had any wisdom he could offer, having witnessed so many families over the years walk this road. “I don’t know how to do this,” my voice bleak. “No one knows how to do this,” he told me. It is not natural that a child should die before their parent. While it happens often enough, it is not the natural order. He was very gracious toward us. I am so very glad to have him on our team, and like Dr. Gardner, I have invited him and asked him to speak to us honestly if and when he believes we have exhausted our options. Dr. Gardner told Sten and I yesterday at the end of the care conference when it was just the three of us, that she thinks of Allistaire every single day. That is all I could possibly ask for. I just need to know that she is being fought for, that she is not being given up. And if they believe the time has come, let them speak and at last we can yield, at last we will rest from our relentless pursuit of her life.

For now, we press on. It is not yet time to lay down and rest. We press on, we endure. We put our face to the wind and cry out in anguish and fierce determination. There may be a way through, there may. There are so many mysteries of how our God works, of his sovereignty and the intertwining of our prayers. I am humbled, brought low, so low with gratitude for thousands who cry out to the Lord on Allistaire’s behalf, on ours. Thank you. Thank you my brothers and thank you my sisters, bound eternally by the blood of our sweet savior Jesus Christ. Thank you for sharing our burden. Thank you for standing out in the wild night under that sweep of stars, that dense shimmer and gauze of Milky Way and crying out for the Living God of the Universe to hear your one small voice! For we are calling out to you Oh GOD! We do not understand your ways. What you are doing is here is so unclear, it seems so dreadfully wrong. How will you ever, ever redeem this loss?

I find myself again standing with the blaze of roaring furnace behind me declaring that I know my God is able to save, but even if He does not, I will not bow to any other god. I will stand in worship, though the fire consume me. Am I fool? Many will nod, yes. But you see, I have seen the Lord. I have heard His voice. I choose to turn my face to Him. I will again fix my eyes on Him. I will yield again to His call to trust though the mountains fall into the sea, for the joy set before me. For the joy that will come, but the joy too that is, that is in this present time. I seek to be fully present to these minutes, these gritty seconds that accumulate to the sum of minutes, hours and days. I instruct Allistaire to consider her tone with the nurses when she is irritated with their presence. It is not about manners, it is about love, love. I seek to love. I seek to love Allistaire. I seek to love Sten and Solveig. I seek to love each nurse, doctor and person that I encounter. For this is my life, to love the Lord my God and to love His creation that bears His image.

Thank you to so many that have given generously to further cancer research. Thank you for your heartbreak over Allistaire’s broken heart and a yearning that there could be a better way. If you would like to stand with us in funding cancer research so cures for cancer can be obtained without costing so much life, please consider supporting me in Obliteride which gives directly to cancer research at Fred Hutchinson Cancer Research Center.

Also, my dear friend and fellow cancer-fighting mom, Pam, has organized a time to call out together to God on behalf of Allistaire. The details can be found HERE on Facebook. The time is set for next Friday morning, March 6th, Allistaire’s 5th birthday. Please do not send any birthday gifts. The truth is, she has enough in the way of toys and such. If you wish to honor her life and the hope for more life, again I ask you to consider taking that desire and investing it in cancer research, and certainly, please pray for my girl. Prayer is not some magic equation where enough prayers by enough people yields the desired result. Philippians 4:6-7 says much to instruct us:

“Do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your request be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

Feb22

Wait and See

Posted on February 22, 2015 by Conglomeration of Joy

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Strange how you can have expectations, just ideas you’ve grabbed from where? Thresholds and time frames constructed of air, of nothingness, no structure to sustain them and yet, they hold power, they help you to endure or enforce the heavy feeling of defeat. Somehow in my mind, when Allistaire first moved to the ICU, I thought, oh, we’ll be here for several days, maybe a week. Upon what basis did I come up with those numbers? Out of thin vacant air. Today marks her 37th day in the PICU. Today we begin our 6th week. I remember a friend telling me they were in the PICU for two months. “How in the world do you do that, survive that?” I wondered.

But here we are, now with no end in sight. Last Tuesday, 2/17, we were scheduled to be transferred to the BMT (Bone Marrow Transplant) team. We were supposed to be at Ron Don with a few weeks of testing to complete before conditioning for transplant was to begin. It stings to move past those dates, knowing transplant, well, who knows if and when transplant will come. In my mind I had counted it out and we were going to be home by the end of June and then we lost July with the idea of pushing back transplant another month to give her heart time to heal. The reality is sinking into me that she may never get to transplant, or at the best, it could be far off. A summer gone. The doctors tell me we must be patient, and wait and see, that it is often best to be patient. Patience, yes, I know something of patience. But while I’m seeking to be patient, leukemia cells will divide and multiply totally irrespective of our best laid plans. While I’m here with Allistaire cloistered away in the hospital, Solveig’s life goes on and I will have missed nearly an entire year her schooling, this added on to the many other months of her life from which I have been absent. To sum it up, I just feel sad these days, a deep pool of sadness ever below.

After 48 hours of being off of Milrinone early last week, the cardiologists decided to put her back on it. Her heart rate and respirations trended up slightly and there was the issue of nausea to consider. They hoped the Milrinone would allow them to titrate up her Carvedilol and deal with these symptoms. While her heart rate and respiration have dropped slightly, her BNP which was 4800 last Monday, trended down only as low as 3400 and is 4600 as of today. I feel disheartened. Yesterday they decided to put her on Digoxin, another heart med. Digoxin is an older med that like Milrinone, can help with symptoms of heart failure but does not necessarily help the heart to heal. The idea is that by carefully monitoring the blood levels of Digoxin and adjusting the dose as necessary (Digoxin can be toxic at higher levels), they can address her symptoms of heart failure in the scenario of a future weaning of Milrinone. They will continue to have to monitor closely her potassium levels as a number of her meds can impact potassium levels. Adverse effects and toxicity of Digoxin are more common when potassium levels are low, “since digoxin normally competes with K+ ions for the same binding site on the Na+/K+ ATPase Pump.” Her Lasix draws off potassium which they replace in her TPN (IV nutrition). On the other hand, she also takes Spironolactone which, “often increases serum potassium levels.” It is amazing the delicate balance of electrolytes that allow our body to function properly and thus the need for careful monitoring by the doctors. Blood pressure must also be monitored closely given that a number of these heart meds reduce blood pressure. Yesterday, they held her Enalapril for one dose and then decided to gone back down a little on her Carvedilol given her blood pressures over night were a little low. Too low of a blood pressure will prevent her from being able to take the heart meds she so desperately needs.

Tomorrow she will get another echo. I don’t feel very optimistic. The BNP hasn’t gone down really. We’ll see. She did not get her BMA (Bone Marrow Aspirate) done last week for two reasons. It was originally planned for Tuesday solely based on protocol. If there are no blood counts by Day +35 of the round of chemo, they go in and take a sample of the bone marrow to see what’s going on. As it happened, her ANC (absolute neutrophil count) finally started coming up last Sunday so the BMA was automatically pushed back until her ANC reached 200 which is the standard time frame with the idea that at that point there are enough cells to look at to make a determination of how her body and cancer is recovering. However, while her ANC has reached 200, they are still choosing to hold off on both the BMA and the PET/CT because both require sedation. At this point, her severe heart failure makes anesthesia more risky. Any sedation would be done in the OR (versus the room or clinic procedure room) and require a special cardiac anesthesia team. Because it is not necessary that her BMA or PET/CT take place right now, they will hold off until her heart recovers more or it becomes imperative to see what her leukemia is doing.

Coinciding with the rise of Allistaire’s ANC, she has had increased pain in her belly. Once her ANC hit 200, the doctors decided to stop the three antibiotics she’s been on for the past five weeks. I was a little hesitant to do so without a CT to be sure that her typhlitus hadn’t worsened. So Friday afternoon she had the task of drinking four ounces of apple juice mixed with contrast. After nearly 45 minutes of effort she threw up about half of what she had slowly sipped down. The nurse re-loaded her cup and she finally got in the minimally required amount. The results of the CT were mixed. “There is minimal residual wall thickening involving the sigmoid colon. The rectal wall thickening has nearly completely resolved. New from prior, the cecum is decompressed and there are areas of mild cecal wall thickening. There is a slight interval increase in degree of surrounding fat stranding. The remaining gastrointestinal tract shows normal course and caliber without evidence of obstruction or focal inflammatory changes.” So overall, she continues to heal and now that her marrow is producing cells, hopefully, the healing will soon be complete. But because there is some additional locations that indicate typhlitus, they are putting her back on one of her antibiotics, Meropenem, for now. Not surprisingly, but sadly, her lungs and liver show evidence of her heart failure, “Interval increase in size of small right pleural effusion with bibasilar subsegmental atelectasis and likely superimposed mild interstitial pulmonary edema. These findings, in conjunction with apparent vascular congestion of the liver may be related to a degree of heart failure.”

The thought that Allistaire’s heart must improve sufficiently to hit that benchmark of an Ejection Fraction of 45 within two months has felt so daunting. I was relieved to run into Dr. Gardner in Starbucks one morning and hear that she has been brain storming Allistaire’s situation. My face immediately lights up when she says things like that – I love and am honored that she constantly holds Allistaire in her thoughts even when she is not physically near. I love that she too is so passionate about finding a way through for her. We are both assuming her marrow remains in remission. So she proposes we put her on Azacitadine given that it worked before. (Allistaire did 7 month-long rounds of Azacitadine when disease was found post transplant and it put her back into remission and kept her there.) I wondered about possibly using Decitabine since it’s a little more hard-core than Aza. We do still have her chloromas (solid leukemia) to consider. She said she would consult the other AML docs. She also mentioned Clofarabine as an option. The conditioning chemo for Allistaire’s last transplant was Clofarabine combined with Busulfan. Busulfan is definitely not an option but Clofarabine could be combined with Cytarabine. All three of these chemo options are easy on the heart and have shown in the past to be effective against Allistaire’s cancer. Wahoo!!! I love options! After Allistaire’s first round of chemo from this relapse, which put her into remission, I really did not think we would be in the position of being desperate for transplant. But it seems that we are here again, desperate for transplant, a terror that may just bring her healing.

I called our financial counselor here at the hospital to see what Allistaire’s bill is. I couldn’t help myself, knowing all that has transpired over this last month. I told someone the other day I thought Allistaire was on at least 15 meds, so I asked the nurse to print me off her med sheet: twenty-five different meds each day, most of which are given 2-3 times per day. Since she was admitted on January 9th for this round of chemo and the following PICU stay, her bill is $1.1 million dollars. Her room alone is $12,700 per night and each GCSF shot costs $1,040 which she got each day for 33 days. This puts her total bill since diagnosis well over 5 million dollars. Isn’t that staggering?! Isn’t it crazy that one round of chemo with ONE infection has cost $1.1 million?! What if that money could be put toward cancer research? What if we could invest millions of dollars upfront to find better, more effective ways of curing cancer? What if we didn’t have to poison the body, destroying the heart and suppressing the marrow so far that the body is left without defense from even the most common attacks? We cannot take the money that has been invested in sustaining Allistaire’s life, nor the money that will continue to be spent and give it instead to cancer research. Such an exchange is not possible. But the need for money put up front toward cancer research is so clearly desperately necessary!

Many, many of you have asked me how you can help. You have felt powerless to do anything to help Allistaire. Giving to cancer research may not feel like directly helping Allistaire but it is! First, it is a tangible way that you can show your love and support for Allistaire and our family on this journey. It is tangible. I see your name when you give and I feel blessed that you would stand by my side in this fight, that you would cry out in anguish for more! Will you stand beside me? Will you give? And you know what? We don’t know how long Allistaire has, but she has lived long enough since her diagnosis to not only be witness to, but be directly effected by new developments in cancer research! Cancer research in the last two years is literally what has provided this combination of chemos that has put stamped down HER cancer and put HER into remission! This is not some ambiguous, indirect, vague blessing. Cancer research is precisely what provided her last transplant which has given her life the past two years. You say you want to help. Your heart is heavy with grief for us. You wring your hands wondering what you can possibly do. GIVE! Support cancer research at Fred Hutchinson Cancer Research Center! It’s not hard, it’s not complicated. Give. Please.

Click HERE to support me in this year’s Obliteride where I will once again have the joy, the sorrow and the honor to tangibly fight this foe that seeks to tear away the life of Allistaire and many others, so beloved.

Feb18

Weeping

Posted on February 18, 2015 by Conglomeration of Joy

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Every day I think, maybe today will be better, maybe today things will turn around, but every day I feel my face slammed hard up against the wall, the hot breath of terror hissed into my ear, knife against my throat. I feel I can’t breathe. I hold back tears more times than I can count. I’ve felt frantic, in shock. She’s always overcome, there’s always been a way through, but maybe, maybe, maybe this really is that closed door we have so long feared, dreaded.

Her BNP today is 4300. I don’t know why. “Heart Failure,” is all I hear now. It supersedes everything else. Her echo was terribly bad on Monday. Her ejection fraction dropped yet further to 18 (down from 29 last week) and her shortening fraction is somewhere around 9 – I never heard exactly, just a number the cardiologist thought she remembered but I never tracked down because those numbers are just like ragged rusty nails dragged hard against my skin. They tear and burn and with all my flesh I despise them! I hate them with violence and I want to tear them to shreds. I want to explode with rage against them and somehow by force of will destroy their reality, tell them NO! You CANNOT be. You are not allowed here. You are forbid to bind yourselves to my child!

I’ve been trying to get her to eat. Ten bites of chicken noodle soup was the goal for the first half of the day. Three bites of apple sauce. So when she threw it all up, it stung with utter defeat and the words of the cardiologists berating my heart, “Nausea and lack of appetite can be a sign of heart failure.” I strain to find some other cause, some other plausible explanation. And there are – her ANC (Absolute Neutrophil Count) started to finally come up on Sunday after 30 days at zero. Sunday it was 30, then 93, 75 and today 172. Her belly pain has increased substantially with pretty consistent pain throughout the day. My thought is that the pain is related to the increase in white blood cells which go immediately to where healing needs to take place – in her gut. This causes the pain and “worse before better,” just like the infusions of granulocytes did. There is a lot of evidence too that she is having substantial pain related to anticipating pain. This ICU stay has terrified Allistaire like nothing I have ever seen. It breaks my heart that even the nurse just coming to scan her ID bracelet causes her to cower in fear. She has experienced so much physical pain and she feels she can trust no one not to hurt her. Oh it hurts my heart, it hurts, it hurts. So now she is also afraid to eat, afraid of the pain in her tummy and just approaching her with food on a fork causes her to cry out in pain.

I have long sought to yield Allistaire to the Lord, to lay her down at His feet. By God’s grace and His Spirit at work in me, I have bent my knee time after time, knowing that He is God, He decides and it is not because He needs some sacrifice from me. While it must seem mad to some, perhaps to many, I really believe that God will bring good, incomprehensible good of unfathomable proportions from these losses. But oh, how it hurts so bad. Suffering and loss are not some abstract yielding. It hurts down to my fingertips, they ache with blood saturated with pain. My flesh throbs with the deep, deep sadness of loss present and anticipated. In walking with God I don’t just get to say yes, I submit to your authority and sovereignty as God and get to skip over these woes. I walk, I walk, intimately aware of every detail.

Yesterday morning I sought to be still before the Lord and wait patiently for Him. The day before I found myself frantic because all that is in me yearns with brute force to be able to turn this tide. I see our doctor walking down the hall before me, whistling. For him, he knows we are doing all we can and in that satisfaction he can rest. But I walk down that same hall behind him feeling my heart exploding and leaking away from me, legs quivering with sorrow soaked weakness and no matter how well we do all that can be done, it will never be enough. It is not satisfying to me. I want Allistaire to live! It is hard for anything less to ever feel like enough. I went home to Montana this past weekend and it was good. It seemed strange that such a place is real – such an extravagant beauty and gift is that place and is ordinary life. Oh how I long with desperation for ordinary life. A little blue bucket with yellow handle hung from the bush by the driveway, now visible because of winter’s taking away of leaves. It just hangs there, piercing my heart right through with memories of this summer when Allistaire and Solveig would play in that crowded hedge of bushes, their little domain, their fort. I cannot get that blue bucket out of my vision. We went about town, just the three of us and it was good but still it took so much not to just cry and cry and long for a time when this might all be behind us and there are four, four, four as it should be. I think back over last summer when we really thought this might all be okay, maybe she had escaped and maybe we could really live. Those memories precious, feel like distant, far off lands you wonder if they are truly real.

Yesterday morning I sought to be still before the Lord and wait patiently for Him. I rose early to exercise, shower and eat breakfast. As I neared the Starbucks line, I caught sight of a little girl I know and her mom and dad. They now live in House B of Ronald McDonald House, in the very same apartment Allistaire and I lived in after her transplant. They have been given a room there because this sweet girl is now on Hospice. Only a month ago I saw her running around Ron Don, bald head and feeding tube, but joy and life abundant. I saw them a few weeks ago, with shoulders slumped and flat faces and the news that there is nothing left for her. Nothing left. They must give into that beast. And I saw her face yesterday, distorted by her tumors now everywhere in her body, her eye bulging but shut closed, flesh strained and contorted purple from the pressure beneath. I looked upon cancer and its devastation as I went to get breakfast. My heart tattered for them and fumbling for words and perhaps silence that loves. I felt I was looking at my future.

I’ve always known it could come to this. But as this darkness closes in and the light seems so dim, oh how I long to turn away, to flee, to scream so loud and unending that I can no longer hear these words of doom. I weary of numbers that slice. The thing is, I know the Lord will be with me. I know that He will hold me up as He does today. It seems too awful to endure and if so, that means I won’t have to endure it will I? No, I very well may have to walk, one tedious excruciating step after another, but I know I will endure. But why, why must this be? What is the point?

A friend of mine whose son died recently fears that her son’s death was punishment from God. How I long to offer her words of life that would take away this overwhelming burden. I went to the passage where Jesus sees a blind beggar and His disciples ask Him why this man was born blind, was it he or his parents that sinned. Jesus responds in John 9, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” This man was desperately poor and blind from birth for the direct purpose that God’s work might be displayed in his life. What sort of exchange is this? Why this wretched suffering so God can get glory? Does He really need more glory? My gut response to the idea that God would cause/allow suffering for His glory is that He is an arrogant asshole. But this is not the end point, His glory is not His aim. His work in our brokenness manifest His glory for the direct aim that we might see Him for who He really is – that His glory would reveal His true self as our only salvation, our only hope, our only source of life. He seeks glory that we might know His love, for that is His ultimate glory, His great love. He loves us and He wants us to have life and He will exact whatever it costs to give us eyes to see how desperate we are for the life He offers. He loves us and He is ever extending His hand and inviting, inviting us in, in to dwell with Him and to be satisfied.

Why must Allistaire suffer? Why must I? In my finite view with my finite heart I can only guess and grab at a handful of small reasons. But what if it is for my friend? What if in my brokenness she can see the hand of God extended? What if He makes His glory known in my life for the express aim of drawing people to the only source of life, which in itself is ultimate mystery, ultimate suffering, ultimate life. It is the bled out heart of God through the sacrifice, the death of His Son Jesus Christ that life in Him is made possible. Who am I to liken myself to Christ? What is my life? It is but a breath, a vapor, but it is my great, immeasurably dear gift to Him. Shall I suffer? How shall I live out each of these days that seem to cut and gouge relentlessly? I walk, nay, I am carried by Him. I now rejoice in the dependence in Him I once reviled. I know not the days ahead, I even dread the hours that will bring by the cardiologists. I don’t know how to let go of this fight. I don’t think I shall until there is nothing left, nothing left.

Most High God who has come down so low, compassionate, merciful, gracious High Priest who is acquainted with all my sorrow, carry me. Make your works displayed in our small lives, for your glory, so that we may all swoon at the beauty of your love that causes us to fall at your feet and be held in you. Spirit of God, help me to be still and wait patiently for you.

Here is a link to sermon by John Piper about the blind man.

Feb12

Stagger, Tremble

Posted on February 12, 2015 by Conglomeration of Joy

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We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. (2 Corinthians 4:8-9)

Hard pressed. Perplexed. Struck down. The weight of sorrow presses so heavy on my brow. Sensations so familiar, so brutally common. How many times have I looked out the windows at this scene, the sky, these clouds ever in motion, wondering, desperate for a way through. I have never had a stalker, never been abused. But I taste the mineral tang of terror reinforced again and again, blood on the tongue. The framework of my days is forced to contort yet again to fit these new truths, these numbers that rip and snare. My heart exposed from tearing flesh. Assault, violence, silent snuffing out with dark weighty force. I weary circling round and round with this foe. Oh hard pressed, gravity compressing my chest into the ground, threatening, suffocating, no relief. Relentless. I catch a breath and am forced down again.

This morning I saw it, that golden light skipping, glinting, light gleeful on current and blue so blue. Green of trees and of grasses, bending like wave, accepting, receiving contortions not offered but forced by wind, yet mild and soothing in the acceptance. That bend in the river approaching Ellensburg, I anticipate, I am eager for that curve and strain to catch sight of it. Scene after beloved scene framed by car window, speeding by, brief but so known, so loved and familiar. Great hill covered in snow, in extravagant purple drapery of flower, the color of candle warmth in autumn, I know thee beloved rise of land. And I yearn for you. My whole being angles forward in desire, attraction. Without thinking, with gut response, I swoon as I see us flying over asphalt, east, east, oh home, dear home.

I will myself to turn, to be present, here, now, in this place. Day by day I must walk. Another day with numbers that do not change. A BNP that rises here and bobs briefly down, never nearly low enough. Every day the same, the same, the same, “no data,” the labs read. “No data.” There is nothing, not a single white blood cell in 28 days. No sign of marrow stirring. Silence. Absence. Cavern empty. And yet, she has changed. That girl thrust so violently under dark water, held down as she struggled and flailed and at last went limp and silent, she is rising, rising. Light returning to her eyes, giggle to her mouth and wiggle, joy, willingness to interact. Allistaire Kieron Anderson is emerging from this ragged fray, this assault. I gaze at her as light in perfect streams enters through window and passes over her face, illuminating a surface of perfect softness, multitudes of tiny blonde hairs. Peach fuzz. Irresistable to the touch, the softest soft, made more beautiful by sensational curves of cheek, perfect little nose and round landscape of chin. She plays and talks and wants me to see what she’s done, what she’s created. I swoon and am drawn in, her irresistible pull of delight. I adore her, my whole being arches forward, captured by the beauty of her sweet spirit. I cherish her.

Heart failure. Like deep thunderous, violent thud of sledge-hammer, the words pound with brute force, threatening to explode my ribcage. Heart failure. I tell Dr. Hakens how I hate to hear those words. “Well, you can’t sugarcoat failure.” Another blow. Monday’s echo was devastating. The door to transplant slammed closed. Her ejection fraction was 29 and shortening fraction 12. The wind knocked out of me and suffocating flee, flailing to grasp some bar of hope, some explanation that in its concreteness demonstrates finiteness and thus capacity for domination. What must be do to stop this torrent of loss, I wail? Are we doing all we can? We push through, we push, we walk forward. There must be a way, there must. This cannot be it. Oh don’t let this be it. How can we accept defeat. How can we just let this bright force slowly fizzle and die? All we have known for three years is FIGHT! How now can we surrender; raise the white flag and say enough? Death as end point has always, ever been there – stark on the horizon. A black silhouette impossible to disregard, impossible not to recognize. But my visions of that last great battle have always been a fight to the last breath, a fight with every last weapon, where if death comes, it comes because at long last we are deplete of weaponry and cancer has won. But agony, swamping sorrow to still have great weapons to wield and yet, simply no strength left, mere collapse. This image wounds in a uniquely awful way. I breaks my heart a fresh.

We have devised a two-part plan. With the direction of Dr. Hong, our cardiologist, her cardiac medications are being aggressively adjusted. She needs to be on Enalapril, a drug she has taken the past two years but has been off of the last mouth because it must be taken by mouth, not having been an option due to her typhlitis. Apparently, Milrinone, the heart med she has been on, doesn’t work in such a way as to enable the heart to rebuild function. It is more of a stabilizer and optimizes blood profusion. This has been essential with the great fluid load of her infection and need for healing of her gut. In order to begin taking Enalapril, the team of doctors decided to push up the timing on her CT which ended up happening late Monday evening. Thankfully the results of the CT were great and indicated “almost complete resolution of typhlitis,” and only “minimal residual thickening of the bowel wall.” Thus Tuesday morning began with her first dose of Enalapril at half the max dose. That night her Milrione was weaned down from .47 to .3. Yesterday, her Enalapril was increased to its max dose and Milrinone turned down to .25. The goal is to also add on Carvedilol today and Spironolactone tomorrow. Carvedilol blocks beta and alpha-1 receptors which results in slowing “the heart rhythm and reduces the force of the heart’s pumping. This lowers blood pressure thus reducing the workload of the heart, which is particularly beneficial in heart failure patients.” Spironolactone is a diuretic than helps reduce fluid retention. Enalapril is an ACE inhibitor. ACE (angiotensin converting enzyme) converts angiotensin-1 into angiotensin-2 which causes constriction of the blood vessels. As an ACE inhibitor, Enalapril blocks this action thus reducing blood pressure and easing the work load of the heart.

Right about now I want to jump up and cheer and sing and dance and smile, smile, smile. I am constantly, non-stop blown away by nature. The complexities, the intricate inter-relations – oh I just swoon and swoon and am enamored of it all! Yes, I hate, hate, ragingly despise that the heart of my sweet girl has been so weakened that it might cost her life. But I cannot deny the wonder of it all. The spectacular, pure extravagant beauty of God’s creation. He made this!

The second component of the plan to get Allistaire’s heart back in a condition sufficient to move forward with transplant, is to delay transplant. At this point, her transplant is scheduled for March 19th. This gives very little time for her heart to recover as these medications are not necessarily fast acting. Before I even talked to Dr. Gardner, I knew this was likely the course we must take. At the very bottom of the list of downsides of delaying transplant, is it means another month at the very least out her in Seattle. It has now cost me July, oh July, sweet singing green exuberant July, perhaps Montana’s most perfect month. The bigger issues with delay are that there is a now a longer window in which unexpected harm can enter; a mere cold could throw everything off. More significantly, the rash of measles outbreaks which are largely connected to unvaccinated children, could literally be the death of her. The measles virus can linger for 1-2 hours after someone infected leaves the area. It hangs in the air, impossible to detect and thus avoid. In a person with a normal immune system, measles can be awful. In a child like Allistaire with little to no functioning immune system, it could very easily kill her.

Secondly, there is ever the beast, ever the threat of being devoured by cancer. Time is a scarce resource in the life of a person battling cancer. Time is a luxury. If Allistaire’s cancer is currently suppressed, it means nothing about what may happen in the coming weeks. Being undetectable in no way means it is nonexistent. Next Tuesday, 2/17, rather than being transferred to the Bone Marrow Transplant Service as originally planned, she will have a bone marrow aspirate taken. If we are still in the PICU (if she hasn’t weaned off Milrinone), then the procedure will be done in her room with the ICU attending providing anesthesia. Otherwise, it will likely be done in the operating room where they have better support than in the procedure room of the Hem/Onc clinic. For the last 28 days her marrow has not produced one blood cell. In her last round of chemo, her marrow began to recover after 14 days at zero. This significant delay is likely a combination of being pounded hard twice in a row by this chemo and her severe, traumatic infection. Looking in her bone marrow will tell the doctors if there is any recovery happening or in the worst case scenario, her marrow is so packed with leukemia that no healthy cells are able to be produced. I think a packed, cancerous marrow seems unlikely given that in the past two years, whenever even a very small percentage of disease has been present, there have been blasts in her peripheral blood. Thankfully, there continues to be no evidence of blasts. Depending on how her marrow looks going forward, the proposed month’s delay in transplant could require more chemo (probably Decitabine), though perhaps she wouldn’t need anything. As is simply ever the case, we wait. We wait and see. We wait.

Every single day feels like an impending death sentence. Every single day a new number can indicate the tide has turned once again. This morning’s BNP, which they are only looking at twice a week now, was substantially increased to 1420. Everyday begins with these numbers. It’s like being constantly pushed around, shoved hard this way and that, ever a precipice waiting to swallow. Waiting is hard, really, really hard. But I have discovered a secret, a mysterious way of God. He loves to make us wait. Not because He is cruel, but because He loves, because His aim, His hope for us far supercedes our own. We dwell on this earthly, temporal plane, wailing in pain, thrashing about, desperate for things to work out as we so desperately hope. We have set our eye on our desire immediately before us. But God…He is over all, under and around, above and below and on all sides. His view engulfs our little view. He waits. He waits with us. He restrains His hand because He is holding back the tide to make room, to provide space in which we are invited to face Him, to wrestle, to grab hold of His extended, merciful gentle, powerful, loving hand. He allows the tension of waiting because it is often in this electrified static that we have most bountiful opportunity to turn to His voice, to seek His face. This is His aim. This is His yearning, His craving, His unbridled passion, to draw us to Himself. It is not that He is unmoved and cold toward my bleeding heart. It is not that He is powerless to change my circumstances, in a flash, in the blink of an eye. It is that He has clarity of vision. He declares that life comes solely, only, directly from being bound to Him. Love is patient. Translated in the King James, it says love is long-suffering. This is the very first descriptor of love. God is love. God is long-suffering. He suffers with us in our sufferings. He endures with us. When at last will we come to the end of ourselves and see that He offers us life. Life abundant. Life eternal.

Father, thank you for drawing out this suffering, for expanding its parameters. For You have filled this space with your bounty, your halting beauty, with light unearthly. I swoon as I fix my eyes on You. You have patiently walked by my side and I rejoice to know that no matter the days ahead, you will never leave me nor forsake me. You satiate and I come running for more, more of you Lord! I come weeping, weeping, calling out for mercy. Mercy Lord!!!

If by any chance your heart breaks knowing how broken Allistaire’s heart is from all of her harsh treatment…if you wish for some better option for her…if you wish her cancer could be cured without destroying her…if you wish there was just a way to put an end to cancer, to obliterate it…

There is something you can do. When we join our resources together, we really CAN make a difference in the options available to children like Allistaire. By joining me in raising funds for cancer research at Fred Hutchinson Cancer Research Center, you are furthering, accelerating the chances for life for kids and folks like yourself, like your mom, your brother.

Click HERE to join me in donating to cancer research as I participate in Obliteride again this summer.

Feb3

Numbers

Posted on February 3, 2015 by Conglomeration of Joy

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This morning I spent nearly an hour on the phone with Lisa Getzendaner, the Unrelated Donor Coordinator, getting a lot of information on the road ahead. I am daunted by the incredible number of details that all have to fall in place. It really feels like we’re on a bullet train, speeding toward our destination of transplant, with a frightening number of steel gates currently down across the rails. They may open. They probably will. Lisa has twenty years of experience with this work and I have confidence in her abilities to coordinate the massive endeavor before us. The gates may open, but the thing is, every single gate must open to get where we so desperately need to go.

Allistaire came to the ICU because of a severe infection in her gut. A few comments in recent days have opened my eyes to just how serious her typhlitis was. On our behalf, the resident asked the surgeons if Allistaire could start having some little bits of ice. When she brought back the answer that she could indeed, she also brought news that the surgeons were surprised that Allistaire was able to make it through this gut infection without needing surgery. I knew that for them to operate on her would have been extremely dangerous given her complete lack of white blood cells, so to hear that they really thought she would need surgery impressed upon me the danger she was in. When I relayed this perspective to Dr. Gardner, she stopped and looking me in the eye, said that the way Allistaire’s colon looked on the first CT was the worst she’s ever seen. She sure did a good job of not letting on about how precarious her condition was. Apparently, had her bowel perforated, a likely uncontrollable infection would ensue. This is in fact how my grandmother, Lillian, died. She died fast. I sat in a plane on the tarmac in Atlanta, trying to get to her, when she died. I am now much more aware how optimistic my assumption was that she would make it through this, that she would be fine. Thank you Father that you preserved her life. Thank you to each of those donors who took a serious chunk of their time to donate their granulocytes. Thank you amazing team of doctors who so expertly and rapidly diagnosed the likely problem and initiated an aggressive and effective plan to support her little defenseless body through this sepsis shock and resulting tremendous insult on her heart.

Now that her typhlitis is so wonderfully on the mend, Allistaire’s primary issue remains her heart. Dr. Gardner talked to Dr. Bleakley, the transplant doctor, who said that her ejection fraction must be 45 or higher in order to be approved for the transplant protocol we so desperately hope for. Since her last echo that showed an ejection fraction of 23, the team has continued to carefully monitor her fluid intake and output, adjusting everything from the concentration of meds and TPN, to giving and timing lasix to pull of more fluid. They are doing everything in their ability to ease the burden on her heart. As Lisa said, if her heart function doesn’t improve enough, this “could be a show stopper.” She has continued on Milrinone. Thankfully, her BNP (a measurement of heart distress) has been trending downward and was 583 this morning. A normal BNP falls in the range of 0-90 and hers started at 2350 from the first time they checked it. Additionally, her SVO2, which is the level of oxygen in her blood that returns to her heart after circulating through the body, has risen to 80 which the attending doctor told me this morning is perfect. “Perfect,” I have not heard that word used describe almost anything with Allistaire lately.

The general plan is to keep Allistaire on the Milrinone until her blood counts have recovered in order to provide optimal blood profusion to her gut, thus aiding healing. We will also wait until count recovery (ANC of 200) before allowing anything to go into her stomach. It will be a process to get her gut working and her eating well enough to provide her the necessary calories and thus to come off the TPN. It is very possible she will get a feeding tube given how small her stomach will have shrunk. The feeding tube would allow constant low level food. This is a bit of a bummer for me as we have managed to keep her off a feeding tube since she was diagnosed. Oh well, something else new to learn. Her blood counts remain in decline. Today she is getting platelets (which she seems to need every 2-3 days) and red blood. Her white blood count remains zero. Today is the 17th day of zero white blood cells despite getting daily GCSF shots to stimulate her marrow to start producing cells again. I sure hope her marrow perks up soon because so much of her healing depends on her ability to heal up with the white blood cells.

Regardless of these challenges to overcome, planning out the details and timing of her transplant must proceed. Allistaire will be transferred to the BMT (Bone Marrow Transplant) service on February 17th. I will have an Arrival Conference, the next day on the 18th. The purpose of the Arrival Conference is to review the process before us, what we know about Allistaire and what testing still needs to be completed. Then for the next two weeks, a great deal of testing and evaluation will take place to determine if Allistaire’s disease and overall health is stable enough to move forward with transplant. She will likely have a bone marrow test February 19th or 20th. Once all the data collection is complete, there will be a “Data Review Conference,” on March 3rd or 4th. Assuming everything is in order and we are able to proceed, Allistaire will begin conditioning on March 9th. This will involve 4 days of TBI (Total Body Irradiation) in which she is sedated and radiated twice each day over at the University of Washington which is just a few miles away. She will then have five days of chemotherapy which includes 5 days of Fludarabine and two days of Thiotepa. There will be one day of rest and then the actual transplant, the infusion of the donor cells, is set for Thursday, March 19th.

March 19th feels so far away. This whole process is taking a month longer than I had ideally hoped. Yet this may be for the best as it gives Allistaire lots of time to recover. Her heart, marrow and gut have been severely injured. This morning the new attending Hem/Onc (Hematology/Oncology) Dr. Hawkins, reiterated that Allistaire’s typhlitis was very bad. The timing is being dictated in large part by the openings available in the radiation schedule and apparently the T-cell manipulation “takes such a huge amount of resources,” that they can only schedule one per week. This time will also allow for finalizing details of payment for transplant. Because both the transplant and the subsequent modified T-cell immunotherapy we hope her to have after transplant are Phase 1 trials, Lisa said she would be “flabbergasted,” if Blue Cross Blue Shield approved them. It looks like our hope rests with Washington Medicaid and ultimately Social Security Insurance based on the view that Allistaire’s cancer constitutes a disability due to her long time hospitalization.

Behind it all, however, is the promise that should all else fail, Seattle Children’s Hospital Foundation will cover the cost of these trials. This boggles my mind. Her last transplant cost $1.1 million. Sometimes I shudder at what Allistaire’s care has cost. I look at my one beloved child and know she is not of greater value than each of the thousands of children who die every day in developing countries. It is not fair that so much is given to her. The Super Bowl helped add a little perspective. Thirty seconds of Super Bowl advertisement time costs four million dollars. That’s about what it has cost to keep Allistaire alive the last 3 years. She is not worth more than the thousands of children’s lives that could be saved by four million dollars, but she is sure worth more than a measly 30 seconds of TV add time. What a world.

Another steel gate is in the hands of the donor herself. She has to consent to both the large volume of cells needed in order to complete the depletion of the naive T-cells for the transplant and for the genetic modification of the T-cells for the trial after transplant. She has agreed to donate and has agreed to the time frame requested but she still needs to give these specific consents. There is not one single thing in the universe I can do to impact her decision. In a stringent effort to in no way coerce the donor, this woman knows absolutely nothing of Allistaire’s condition, her age, the severity of need – nothing. So many gates barring the road before us. Most of this post was written yesterday morning long before results from Allistaire’s echo came in. The day ebbed by at a painfully slow pace. I felt I could not leave the room because at any moment the cardiologists would come in with news of her heart. Yesterday the weight of sadness lay heavy. Day became evening and then night with still no word. The nurse graciously harassed the resident in hopes she would in turn harass the cardiologist for results. Corrine, the resident, came in just before 9pm beaming once again. She made the cardiologist repeat himself several times to be sure she heard the number right. “The ejection fraction is 45,” she said with nearly uncontainable smile. FORTY-FIVE??!!!!! “That is the exact number it has to be for her to move forward with transplant,” I told her with laughing, shocked joy. God, who are you? Really who are? I know your face is just beaming, beaming with joy, with delight to bring us delight. So what you’re saying, Lord, is that you have her in your hands? What you’re saying is that this is not hard for you? We need 45, well here’s 45. Thank you Lord, Thank you. I think we were all flabbergasted at that incredibly glorious number.

It has been 19 days since Allistaire was transferred to the ICU, quite a bit longer than I had ever guessed we’d be here. This is not how I envisioned this round of chemo going. The funny thing is, just two days after her chemo, when she was detached from her IV pole and it seemed we had three easy weeks ahead of us, I thought, “God, this is what you have for us? This seems too easy. We never have it this easy. Three weeks just to hang out and wait for her counts to come up? Well, show me what you want this time to look like.” Two days later she was in the ICU. Today was a delightful day of progress. The morning began with the removal of the NG tube in her nose that was used to pull out any stomach contents. Then through immense protest and fear, the IV in her foot was removed. These days she is literally terrified if you come near her with anything. She knows she gets a shot every night and has had many painful experiences in the last two weeks. Even her bath elicited cries of, “I’m scared, I’m scared.” It was her first real bath in nearly three weeks and now she smells lovely and her cranium is extra shiny. Lastly, we changed her dressing. I am thankful for so much progress and the opportunity to get her up and trying to walk again.

The top picture is one Solveig drew last Tuesday after doing FaceTime with Allistaire and I. This is Solveig’s view on Allistaire’s world. It sobers me. I’ve also included some fun pics from a joyous weekend recently that my two sister-in-laws, Jess and Jo, came out for a visit. My mother-in-law has been here this weekend, giving me some nice breaks and enjoying time with Allistaire.

Jan9

All together different

Posted on January 9, 2015 by Conglomeration of Joy

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Today we walked down that long white corridor, light reflecting up from glossy floors, that tunnel to the Unit, but without trepidation, without terror, without the clamp around the throat threatening to cut of your breath. Today we delighted in the amusing sight we gave the world around us – a little bright flower, a bald girl giggling with the effort necessary to tow the absurdly overloaded wagon and I pushing the equally loaded wheelchair, coffee in hand. The tower of the hospital surrounded in a white swirl of fog made it appear we were entering another world, a secret passage to some Narnian existence. And so it is, we reenter the world so strange, yet so familiar it has become beloved. There a whole cast of friends surround us and an altogether different language is spoken. Creatures of unexpected features are common here – the gorgeous unfettered curves of craniums, luscious curve of cheeks round as grapefruits, hair flourishing in disregards to the confines of foreheads, upper lips, backs or silly breaks between brows, lines swing from chests and poles accompany these little ones, simply one more appendage.

We all know what we’re doing here. We’ve come to slay, to annihilate, to wield weapons of mass destruction. We have come to destroy a destroyer. Ushered down the hall to the very end, we enter our new room, Forrest 7A:308. This is the MIBG radiation room. The room is lined with lead. Two doors, one lead, protect those on the outside from what typically takes place in these few square feet. It is no matter that cancer is merely a wee little cell, it is within its confines that disaster has taken hold and must, must be stopped or its insatiable fury to divide and conquer will force its own suicide. So the poisoning began promptly at 10 am, with joy, with chatting, with laughter, with ease. First the Cytarabine, then the Etoposide and finally the magical potion – blue thunder – which later turns Allistaire’s pee a fantastic happy green.

I slept well last night and was simply ready to get this show on the road. This round, this entrance into the constraints of the hospital this time feels all together different. I walked through that door with hope. There was none of the dread of the last round of chemo. It worked and there is the hope and expectation that this combination of chemo will continue to do the same. Allistaire is full of life and glee and a fair amount of weight packed on to get her through the dip in appetite that will invariably come. Our great volunteers from Side-By-Side (a ministry of University Presbyterian Church) came again today, just as on previous Friday’s. Allistaire cannot get enough of them. When they arrive she is beside herself with silliness and when it is time for them to leave, with her most forlorn face possible, she asks if they cannot play longer.

So we look out into the days ahead, at least 28 of them, looking for what the Lord will lay before us. Let us make the most of these days! Let them fill and swell with all the Lord sees fit. Let us seek diligently to love each face that enters this room. Let compassion and love fill my heart for each nurse, doctor, fellow parent, sweet patient and staff person that gives so tirelessly to care for us. God help me to make the most of the opportunities you give, not disregarding them because of laziness or intimidation or selfishness. We have been placed by the living God into these hallways and rooms for this specific window of time because of His great and beautiful purpose. Yes, we are here to walk through each step to fight for Allistaire’s life and we will, I will! But Lord, help me to keep my eyes open and my heart willing to every open door you given and fill me with your Spirit that Your love, Your light, Your hope can overflow! That is my joyous hope. This is what invigorates my spirit. Let me not deprive myself and others of the bounty that He intends!

For those of you who pray for our days, pray for these things as eagerly as you call out to God to heal Allistaire! You know what I want to see God? I want to see you raise the dead! I want to see you raise the dead cold heart of stone and breathe life into dry bones in the wilderness. That is the miracle I’m asking for! Do you hear me God?! I am calling out to YOU the Ancient of Days, you who tarry only because you want that all should know the eternal, abundant life you are holding out to each of us through the sacrifice of Christ. Father, who am I that I should lay down my life, what is my life, but Lord I do, I do! I say yes to whatever you have for me because I know my suffering is temporary, it is short, it is light and I am asking for the ultimate pay-off: that other’s should have eyes to see you, that people would be drawn to your irresistible beauty and magnificence. Oh Lord, you know how I love, love your otherness, your ways that are not our ways, your good that surpasses our comprehension, the paradoxes that so enamor – oh that others could see you for who you are. And Father, show me more of yourself, more, more! I want to see new facets of your face, new angles of light, even shadow. Lord, you are all together beautiful. May I greet each day with this deep, swelling joy.

It has been nearly three weeks since Allistaire and I left the hospital. I didn’t want to leave for fear of all the inevitable exposure Allistaire would have, but it has been a wonderful break. It is SO great to have not one person walk into your room at night, to stagger to the bathroom in disarray with no regard to modesty. Sten and Solveig came out for a week over Christmas and we had such a great visit. The girls played and played and played and giggled ceaselessly. They have such a better time interacting outside of the hospital, without all the constraints. Uncle Jens and Aunt Jo also came out for a visit from Bozeman. We made the most of good weather and went to various play grounds as often as possible. Friends of a friend were out-of-town for Christmas and allowed us to use their home which made it possible to cook Christmas dinner and be together with my parents. All in all it was all we could possibly ask for with our time out of the hospital. It wasn’t home and that’s a bummer, but boy did we love the freedom.

This is our second 39 day round of chemo, identical to the last one. She will have three different chemos each day for five days and then it is simply a matter of her blood counts dropping and eventually recovering. Twenty-eight days is the standard estimate of how long this drop and rise process takes. Day 28 will be February 5th. There’s nothing magical about February 5th, it’s just an estimate. Once her ANC gets back up to 200, she will have a bone marrow biopsy and aspirate, another PET/CT, echocardiogram and an EKG. I will include below some pictures of her last PET/CT. I believe the one that is just a white image is from the CT and the one with reds, yellows and oranges is the PET scan. The computer overlays/combines the CT and the PET scan giving more complete info. And in reality, there are many, many different images because they are like horizontal slices of her body, not simply one top-down view. The brighter the image on the PET scan, the more metabolically active is that location. There are many bright spots but that is because there are numerous places in the body that are metabolically active when given the infusion of glucose, but the cancer cells show up differently and in locations that would not be expected. They use this scan in combination with the CT which shows physical masses to get a clearer, more detailed idea of what is going on with her chloromas. I mentioned before that they are not sure that the spot on her left hand is actually leukemia because it has remained the exact same as the base line scan. I just learned in our clinic appointment, that this idea is also supported by the fact that there is no corresponding lesion showing up on the CT. They think that the area of brightness, which is in the web space between the thumb and pointer finger on her left hand, may actually be due to her thumb-sucking immediately prior to the scan. I have asked that they do whatever necessary to really sort this out because I would really like to avoid focal radiation to her hand, which could deform the bones, if it is not clearly necessary.

Once this testing is complete, she is nearly ready to begin conditioning for transplant which includes radiation and chemotherapy. I am not sure if there is additional testing that needs to be completed. Were she older she would have to complete a pulmonary test to determine the health/strength of her lungs. Of course there are various blood labs that look at organ function such as that of the liver and kidneys, but this would already be done routinely. There may also be some period of time where they want her blood counts to recover more. I believe her ANC would ideally need to be 750, but in reality, they would only estimate how long this could take and calculate that into her schedule. I anticipate hearing from Dr. Gardner sometime in the coming week more details on timing. She said she wanted to discuss with Dr. Bleakly (the transplant doc whose trial we are hoping to have Allistaire participate in) and get a schedule on the books. It is exciting to step nearer to that mighty goal of transplant!

Dec21

Juicy

Posted on December 21, 2014 by Conglomeration of Joy

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Ours is a sanitized fight. I have only ever seen two insects on the Unit. One would never know there was weather outside were it not for the horizontal planes of glass affixed to the side of the new building to contrast the vertical slices of blue, orange and green glass. The rain hits the horizontal slabs, reminding the inside dweller that life does indeed exist out of these confines. How I treasure those horizontal planes. Ours is a tedious, slow fight of absurd wealth. The amount of financial, material, technological and human resources brought to fight for Allistaire’s life is staggering. The light is bright with cheery images on the walls and flashes of exuberant color. Countless groups come to the hospital and to Ron Don to make the season joyous. Gifts flow in and in and in. Everywhere smiling faces, time given to compassionate conversations and cheering us on and rooting for Allistaire. Everywhere love and support. Ours is a fight with so many allies.

In anticipation of the movie, “Unbroken,” coming out, I am determined to read the book first. Much to my chagrin, I have not read much of history and this account of World War II in the Pacific gives me a much enhanced admiration and appreciation for our veterans. How they faced the horrors common to war is awe-inspiring. Their fight was poorly financed, poorly equipped and fraught with terrors I cannot begin to grasp – exploding flesh from countless weapons, disease, lack of medical care, sharks, exposure, starvation, torture. In the same way that we press forward, unwilling to loosen our grip on life, they endured, they strove to hold onto life. When Allistaire was first diagnosed, I kept thinking, if I was a Haitian mother, I would simply have a dead child. There would be no fight. There would simply be a swift succumbing to wretched disease. So it has been throughout history and so it is in countless stories across this earth at this very moment – fights for life – lives cherished and infinitely valuable.

I went to bed Thursday night with the thought that we have been given SO much. It is privilege to even have the opportunity to fight alongside Allistaire for her life. Few have been given so much with which to battle, to persevere. Who are we to have been so blessed? The thought of what people must endure on this earth is utterly heartbreaking. This fight tears constantly at my heart and yet, it is gift. It could be so very different. I went to bed more at rest in my spirit. I woke less and still woke with heightened anticipation, but not terror. I know the Lord is good and He sees the whole expanse while my sight is limited to a ridiculous degree. Who am I to say what is best and thus what tomorrow should bring? I keep handing her over to Him, entrusting her to Him, entrusting my heart and my life to Him. Do as you please Lord. You are my whole heart and it swells with longing for you Lord. I live a dual anticipation – what will come to pass with Allistaire and looking for what the Lord will do. The question of “why,” has never dominated my thoughts. The earth and all that is in it is broken and it longs with eager anticipation for the coming of Christ to fulfill all His promises and restore and redeem. The question of why rests far more on, “Oh Lord, why have you brought this wild, wringing sorrow into my life? You are not an arbitrary God. You are a sovereign, beautiful God, so what is your good intention for this road you are having me walk? Why us, why now, why here? Who will you put in our path? How can I walk these halls and these days with face radiant because I HAVE seen you?!” I don’t believe in accident. I ask, “why,” because I am on the lookout for the beauty of what the Lord will raise up out of these days.

I actually experienced rest Thursday night and woke Friday once again in prayer, once again asking the Lord to orient my heart to Him – that He would fill my vision. He has provided so abundantly, will I curse Him now if things do not go as I desire? He is not a fickle God. Is He not still the same good God when blasts appear on the lab sheet, when Flow Cytometry reveals an ugly diseased marrow? I rose from my surprisingly comfortable couch bed to go and find our nurse, Nate, to discover what the Lord gave this day. Allistaire’s ANC was 230 and there were zero blasts. This meant a green light for her bone marrow test and ecstatic joy. My joy was compounded when the doctor who did Allistaire’s bone marrow brought out a bright red, juicy sample of bone marrow to show me and tell me how good things felt in there, how simply good the sample looked. On Friday they did a bi-lateral biopsy and aspirate, meaning they took sample from both hips in order to ensure sufficient sample given how hard it was to achieve last time due to the fibrosis. Friday’s sample showed a changed marrow. So, no blasts, rising ANC, platelets and hematocrit, a juicy fabulous sample of her marrow, lots of energy and no pain – as Dr. Gardner said, we have “guarded optimism.”

After I put Allistaire down Friday for her nap, I went to Ron Don and laid down, intending to read, “Unbroken.” With lights of the room blazing around me I allowed myself to succumb to sleep. Three naps in one week – what in the world? A year could go by and I would not have typically had a nap. Naps don’t work for me. But an incredible exhaustion settled me flat on the bed and I dozed. Perhaps I should be packing clothes for the next few days, but who could know which way the next few days would twist and turn. I met with Dr. Gardner on Thursday afternoon to discuss three things: what was necessary to move forward with transplant, Denver and discharge.

As Allistaire’s ANC rose over the past week, the team started talking about discharge. One might think that I should be excited about getting booted from the hospital but in fact “out there,” is a terrifying world I’m not excited to take Allistaire into – especially not now. The docs pointed out that she has an ANC now which means she has a few lymphocytes (white blood cells) to fight illness. Yeah, but perfectly healthy people with astronomical ANCs are getting taken down left and right with the flu and various other horrid colds and such, not to mention the Hand, food and mouth disease and Whooping cough going around Montana that could carry itself in the backs of our family. Now more than ever, it is utterly essential to protect Allistaire from getting sick. If the chemo has miraculously succeeded in getting her disease knocked down enough to move forward with transplant, then a very precise timing begins where two very separate lives must intersect at exactly the right moment. The “conditioning,” (chemo and radiation), for transplant is timed in alignment with the donor prepping for the removal of their stem cells. Cells are living organisms and can only survive so long outside the body and as conditioning begins for Allistaire, the process of permanently destroying her bone marrow has begun. So, it is imperative that nothing stands in Allistaire’s way of walking each carefully planned step forward to transplant if we are given that option. Something like RSV (a respiratory virus) is actually fatal in transplant. She won’t have time to “get over being sick.” The thought of leaving the hospital means she and I will be trapped alone in our room at Ron Don. She can’t be in the communal areas and in order to get food I would have to take her with me to the grocery store which is a hot-house of hacking, sick people and kids. Our best option is to go very early in the morning or late at night when we have a chance at steering clear of the sickos.

Then there was the issue of Denver. So the bummer news is that the initial findings of the study, in the adult patients anyways, is not too impressive. Only about 25% had a good response. As Dr. Tarlock later told me, these aren’t such poor statistics for a single agent and likely this drug will be combined with other therapies in the future to have a far greater effect. The truth is too, that this trial is Phase One, meaning they are only testing for safety, not efficacy. The point being, it doesn’t seem worth it to send Allistaire to another state, another hospital, another group of doctors for a drug that isn’t a likely hit for her – unless there are no other options of course. Dr. Gardner was going to see if she could contact the principal investigator and get a sense of how the pediatric patients were responding, as it could be quite different from in the adults.

By the way, here is yet another plug for pediatric cancer research – did you know that the NCI (National Cancer Institute) only gives 3-4% of its annual budget to funding pediatric cancer research specifically? Here’s the problem, far fewer children get cancer than adults so it is not in the pharmaceutical companies financial interest to fund research to treat pediatric cancer. So really, kids only get what eventually might trickle down to them from cancer research in adults which means much more time passes before there are any breakthroughs for kids with cancer. Additionally, there are a number of cancers that only children get, like neuroblastoma. Even AML, which is the most common form of adult leukemia, most likely has different origins and characteristics for children than in adults. When a child is treated for cancer, their body is rapidly growing and every organ from the heart to the liver and brain are being poisoned from the chemotherapy and radiation. Chemo targets the fast growing cancer cells. In kids, all the cells are growing far more rapidly than in adults which means their healthy cells are much more vulnerable to the onslaught of chemo and radiation. When an adult is cured from cancer, their life has been extended by and average of 15 years. When a child is cured from cancer, their life has been extended by an average of 71 years. So if the NCI won’t fund pediatric cancer research and the pharmaceutical companies have no incentive to do so, it means the real hope for children with cancer rests with the private donor. Allistaire has benefited directly and significantly from research at Fred Hutch which treats adults as well and I will continue to root for them and seek to raise money for what they are doing, but there is also a place for giving directly to childhood cancer research.

Okay, back to the most significant issue at hand – what reality will enable Allistaire to move forward with transplant? What must be true from the results of the bone marrow aspirate and PET/CT? Dr. Gardner said the most important piece is that the disease in her marrow must be quite low. The less there is in her marrow, the more likely the transplant is to succeed. So while the transplant allows the patient to not be in remission, it is still far better that they are. She said that if the pathologist looks at Allistaire’s sample under the microscope and she is morphological remission which is defined as 5% or less disease (this is the lowest detectable amount with the microscope), then she will be in good shape to move forward with transplant. Of course there is also the issue of her chloromas (locations of solid leukemia). One would presume that if the chemo worked in her marrow, it would do the same in the chloromas but apparently tumors have their own micro environments that can allow and promote cancer cell growth that doesn’t take place outside of them. Only the PET/CT will tell the truth about what’s going on inside, but so far she has not had any pain which is a good sign. Neither Dr. Gardner nor Dr. Bleakley are super concerned with the chloromas simply because they can be treated with focal radiation if necessary. Of course this is not optimal as every part of the body that is exposed to radiation is more prone to develop cancer in the future and can be damaged or deformed. I am sure that an increase in the number or size of the chloromas would require quite a discussion, even if her marrow was in good shape.

I left my time with Dr. Gardner with the plan that she would see what she could find out from Denver, and that if her marrow looked good, we would be discharged from the hospital and if not, we would stay in. So what’s the point of packing I thought. I lay in a flattened, utterly still state. The phone rang with that attention grabbing number ever emblazoned into my brain: (206) 987-2000. My heart jumps every single time that number shows up on my phone. Even when all has been well that number gets my heart thumping and dampness of the palm. It was Dr. Shoeback, the attending doctor at Children’s. “The pathologist can see no cancer cells in Allistaire’s sample.” WHAT? Utter ELATION!!!!!!!! I could not believe my ears! Allistaire is in morphological remission and only the possibility of a horrible PET/CT stands in her way of moving forward with transplant. After the exhausting torture of her last relapse, I could not have imaged this being possible. But it worked!!!!!! On Monday we should have results back from Flow Cytometry, but that will only give us a number below 5% and while it would be awesome if it was zero, it doesn’t need to be any less than 5% to be given the open door to transplant.

On Monday at 1:15pm, Allistaire will have her PET/CT scan and by the end of the day, I should hear from Dr. Gardner with the results. Of course a plan can’t really be formulated until all the data is in, but the AML docs and Dr. Gardner are discussing with Dr. Bleakley what would be the best plan for “bridge chemo.” It is necessary to have some form of treatment between the end of this round of chemo and conditioning chemo because you ethically can’t get the donor moving forward with their steps until you know you really can have a transplant. By the way, while Allistaire has no U.S. donor, Dr. Bleakley is trying her best to exhaust all possible options for Allistaire. She is in contact with the German version of the FDA to get approval on their end to get a consent process with the overseas donor to manipulate the T-cells. I think the idea is that this is an additional step taken with the donor’s cells and because the donor’s cells are technically part of the donor or owned by the donor, they have to give consent. If you want a super interesting read on this topic, check out, “The Immortal Life of Henrietta Lacks.” If approval is given through the German system, Dr. Bleakley can then seek out approval from the FDA. Even if all this approval goes through, there is still the issue of the timing and age of the cells given the additional time that would be required to process the cells in Seattle. If the donor is from a “major center,” in the German system, this increases the likelihood that the quality and timing of the cells could work. Dr. Bleakley says that ultimately it will be up for Sten and I to decide what we want to do. It’s a gamble really. The conditioning chemo for the trial transplant and the standard transplant are different. The donor cells could arrive from overseas and it be determined that they are not in good enough condition to be processed and take out the naive T-cells. In this case only the minimal processing that always occurs with donor cells would take place and Allistaire would get the transfusion of donor cells as is. There is a lot to consider, if even we end up having that choice to make. In the mean time, Allistaire will need some chemo to keep the bad guys down. This could either be another round of the DMEC (Decitabine, Mitoxantrone, Etoposide, Cytarabine) which she just had – in the clinical trial it has been given in one to three courses. Because her heart remains in good shape, this would be an option. Additionally, Decitabine can become even more effective over multiple courses in the same way that Azacitadine does, which she had post-transplant last time. Another option would be Decitabine alone. Lots of brainstorming amongst the docs is necessary.

I can hardly believe it. I can hardly take it in. I cannot stop smiling!!!!! My girl has been given one more open door. Every day of this journey feels like walking around a blind corner. There is absolutely no way to predict what the next day will bring. Often the entire trajectory of your world can shift from morning to night. The wind blows, the seas rage and toss and yet the north star is unmoving. I keep my eyes fixed on Christ, my one sure hold. Tomorrow morning we rise to a new day. I have no idea what will be known when I lay down to sleep Monday night. What if this whole thing, this crazy journey is just so that I would meet Debbie today in the rug aisle in Target? What if all these years of highs and dark lows are so that I could tell her, Debbie, my hope is in God! My hope is in God! Not that He will save Allistaire, though I have joyous confidence that He can overcome the most hideous of cancer cells, but that this whole crazy life and world are His and He will accomplish the beauty of His will which is more magnificent and glorious than we could ever, ever imagine. His promises are sure footings. Debbie, your hope can be in God, in Christ the Savior who was born to bring peace and goodwill to all men! Oh let the whole earth, the whole wondrous earth sing His praises, may every cell of my flesh rise up and strain to declare His love, His beauty, His overcoming power to redeem and raise the dead, the dead heart, the dead flesh. He is coming, He is coming and I am on the lookout!

(The top picture is of the vial of her bone marrow aspirate and the the tiny bit of bone is the biopsy. I’ve included at the end a number of pics from three years ago – always wild to see some perspective on our journey)

Dec18

Pounding Anticipation

Posted on December 18, 2014 by Conglomeration of Joy

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Growing up, as the days grew near to Christmas, my brother, Patrick, and I would be wild with excitement. In the last few days preceding Christmas, I would abandon my room and take up post on his top bunk bed, going to sleep at night dreamily gazing at fuzzy orbs of red, green, yellow and blue reflecting against the ceiling from the Christmas lights lining the roof outside. On Christmas Eve we were so giddy we could hardly fall asleep and seemed to wake up repeatedly only to slump back to bed once we realized it was still the middle of the night. In the final hours, before the time we had negotiated with our parents, we would lay on the floor, chins in hand, staring at the clock with the red digital numbers and faux wood grain siding. Our joy and anticipation of what lay under the Christmas tree downstairs was uncontainable. We took great care to contemplate all the joyous possibilities.

The last several mornings I wake with a shocking pounding of my heart. I check my phone, it’s 4:36am, it’s 3:56am. I lay there with eyes wide and the disturbing sensation of a thump in my chest that seems too palpable. I tell myself to go back to sleep, it’s a long time before 6am when I will rise and that will be the time to get her labs. Even as I lay down at night, I know the morning is coming. There is some clicking sound that keeps waking me. I am convinced the nurse is in the room with the familiar click followed by the sound of the blood pressure cuff expanding telling me 6am vitals are underway. It’s the time of reckoning. I lay utterly still, ears alert, straining but hear no more sounds. It’s just the refrigerator. It’s not even close to 6am. I force myself to go back to sleep. My bladder demands I wake and as I round the corner into the bathroom I scan for a white sheet of paper – maybe the nurse printed labs early and it’s lying there waiting for me.

Allistaire’s room is decked out in Christmas joy – tinsel, ornaments, pink tree and battery operated Christmas lights – some cheerily blinking their bright colors, others transforming slowly from one array of colors to another. But just underneath that holiday cheer, underneath the sparkle of snowman tummies and reindeer hanging from the IV pole, the anticipation courses in an altogether different direction. While it seems all the world around us scurries about in final preparations for the biggest holiday of the year, our life ebbs one single day at a time, one lab draw to another. One 6am to the next 6am. Christmas is a blank day on the calendar. It lies in an altogether different realm. Christmas feels more significantly like next Thursday and Thursday dwells on the other side of Monday.

Every day in rounds the resident doctor repeats the same line, “awaiting count recovery.” That is our plan of action. We wait. Here we are on the 30th day of this round and Allistaire’s ANC (Absolute Neutrophil Count) has been on the rise. Her marrow is recovering. Yesterday it was 157 and today it was 171. It needs to be 200 in order to have a bone marrow test and in anticipation of this, she is scheduled for her bone marrow tomorrow morning at 11:15. This time they will take samples from both hips in order to ensure a sufficient sample. In the past her marrow has been so fibrotic, it has been difficult to even get enough aspirate to test. They will also be giving her intrathecal chemo which is chemo placed directly into the spinal fluid.

There are essentially four tests by which her cancer could reveal itself – in her peripheral blood in the form of blasts which would be seen in her labs, in her bone marrow as seen under the microscope by a pathologist and/or through Flow Cytometry, and/or in the PET/CT scan which is scheduled for 8am on Monday. Each day presents another opportunity for the unseen to become seen. Each day I scan down the long list of items quantified, hastily pursuing the one number that matters above all else – Absolute Blast Count. Our whole life feels balanced on these tiny pinpricks of numbers, these infinitesimal objects that determine the course of her life.

It’s finally 5:45 am and I reach over to turn off my alarm. I do not spring from bed. I do not slowly rise. I lay there, still, looking for the face of Christ, calling out to Him. I survey what I know to be true about Him. I consider His Word. I reflect on how He has cared for me before. I fix my heart on His promises. It is becoming less hard to yield. But the thought of losing Allistaire has lost none of its sting, its slice, its atom crushing force. My heart pounds and I gather on my armor, knowing I may be run through with the blade, but miraculously, I am incapable of utter defeat. I carry the quiet power within me, conscious of the ripping pain that can still penetrate. My feet hit the cold linoleum floor and the day has begun, but the battle started while I lay still.

So much bounty. “You’re on the VIP mailing list Jai,” Marie, the Unit Coordinator, tells me. “What does that mean?” “Oh, you get so much mail, more than anyone else.” The packages pile up on the floor. The envelopes keep coming filled with words of compassion, love, delight, faithful prayers and tangible helps. Every need we’ve had has been met, not just sufficiently, but abundantly.

Allistaire herself, is also doing remarkably well! As of today, she has finished her 14 day course of the antibiotic, Cefepime and ethanol locks on her lines have been discontinued. This alone means a far quieter night that now only requires vitals and labs. Because she is such a rock star at taking all her meds by mouth and drinking her required 44 ounces a day, she has also been taken off IV fluids and is completely detached from her IV pole. What glorious freedom this is! Allistaire’s appetite continues to improve and she gained .3kg over her intake weight. Perhaps most phenomenal are the results of her Echocardiogram and EKG. All her cardiac function is doing excellent, which is especially amazing in light of the chemo she had, mitoxantrone/blue thunder, which is well-known to be hard on the heart. Her ejection fraction prior to this round of chemo was 65, now it is 63. Her shortening fraction started at 33 and is now 32. I am in awe of how well her heart has held up thus far! God has not stopped pouring, and I mean literally, pouring out His blessings on us! Allistaire goes throughout her day with silliness and joy, ever in hopes of playing tricks on the staff. She rides her bike around the Unit unfettered, pink, yellow and blue butterfly wings aloft behind her, vampire teeth firmly clamped in her mouth and my constant exhortations, “Slow down Allistaire!”

I think it is this radical contrast of such a thriving, vibrant being and the real possibility of the life being drained from her by cancer that causes such dissonance in my heart. How can the two possibly coexist? But this is what I face each morning with labs, as I wait for each test result – the beauty of her bright smiling eyes with the knowledge that Beth has gone home without her son after just shy of a year in the hospital and three bone marrow transplants. The living can die. We are not exempt. God does not promise to open the doors before us.

Allistaire and I watched a Disney movie about a grizzly bear and her two cubs today. We just decided we liked it so much, we might watch it together again tomorrow and this time it won’t be so scary because we know the outcome of the story, the big mean male grizzly does not find the sweet little cub and tear him to pieces. The story has a happy ending. I dwell within my story and I don’t know all the twists and turns of the plot, but my Father in Heaven has told me the ultimate outcome. It has a happy ending, at least, in the very end it does. Sometimes the anticipation caused by ever balancing on a nimble edge over a cliff is exhausting and all-consuming. I may fall, I may not. It is time to get to bed and face another set of labs in a few short hours. I may fall, but I won’t be dashed to pieces. My anchor is in the Lord.

Jun13

One Year Post-Transplant Long Term Follow Up

Posted on June 13, 2014 by Conglomeration of Joy

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“The peace is partly in being free of the suspicion that pursued me most of my life, no matter where I was, that there was perhaps another place I should be, or would be happier or better in.” ~Wendell Berry

I went to see, “A Fault in Our Stars,” the other day. I wanted to see how Hollywood would portray pediatric cancer, this time in a group of three teenagers. One line stood out to me. Hazel Grace, one of the main characters that has battled cancer since she was 13, said something along the lines of, “I just don’t want this particular life.” I get that. How many times have I looked out over the landscape of my life and these gut wrenching circumstances and thought, “Can I just trade this life in for another?” This is definitely not the life I envisioned for myself.

Why subject myself to two hours of woe? Why do I need to watch cancer ravage more lives, even if they’re fictional? I knew my heart would be battered again but I find myself at times willfully choosing to thrust myself into the midst of a sad story, not for some masochistic desire for sorrow, but really, for love. I have a hypothesis. If we cultivate our imagination, we increase our ability to empathize and demonstrate compassion, and thus, to ultimately love better. One reason I delight so in stories is that they put me in the place of a person I can never be. I will only ever live one life. But stories craft a world for me that allows me to enter in and see histories and places and lives that are out of my reach, that are foreign to me. In stories I am offered a view through someone else’s eyes and I can begin to grasp the joys and wounds of another time and another place. We moved to Montana in part for our girls to have more opportunity to cultivate their imagination. How wondrous that rock and stick and hill can supply such grand stories. How even more fantastic that imagination can make our hearts swell with compassion as we imagine ourselves in the place of friends and family whose beloveds have been shot down in yet another school shooting. Empathy drives compassion which in turn produces acts of love.

Perhaps I am in greater need than the average person to cultivate this need for imagination driven love, for I am actually quite poor at loving well. I lit into Sten the other morning, going on and on about how I couldn’t stand the smell of his after-shave. When I saw the wounded look on his face, compassion did not rise up, defensiveness did. When I berate Solveig for some failing, what I have so often failed to do is put myself in her shoes, imagine life from her sweet 7-year-old eyes. I rage and bellow because I see only from my finite perspective.

I wonder too if imagination might aid me in faith. There have been quite a number of points over the last 3-4 years that I have surveyed my life and wondered, “Hey God, I’m not really sure how this is/was a good idea.” “Hey God, really? This is your grand plan? You think this is a good way to go?” “If you’re in control, why would you let this or that happen?” God calls me to trust His word, His promises. He calls me to walk by faith. In the book of Hebrews it says, “Now faith is confidence in what we hope for and assurance about what we do not see…By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.” God is up to something. The creator God is creating something out of this little life of mine. What will one day be visible is not visible now. What will be seen is not made of what is now visible! God gives glimpses in His Word of what will one day be visible, of the bounty He promises when His plans are complete. God has given me glimpses of how He has and is using these tedious and brutal days. My imagination for what may be, fuels my faith to rest in His promises. I am banking on the hope that there is more to all this than I can see.

One year ago, I could not have imagined Thursday, June 5, 2014. It was my birthday. I turned 39 and I got the most phenomenal, glorious gift I could ever ask for in this temporal life. One year ago, Allistaire was undergoing daily radiation and then eradicating chemotherapy in preparation for her bone marrow transplant. A year ago, I sat across from Dr. Dahlberg who started our meeting by saying that what we should be talking about is how there is nothing left for Allistaire, how a bone marrow transplant would give her a less than 10% chance of survival and therefore, it wouldn’t be offered to her. A year ago, her cancer had spread to eight places outside of her bone marrow and suddenly halted. No organ was touched by leukemia. A year ago, we were wading into deeper and deeper unknown and desperate, desperate hope that somehow, some way this clinical trial for transplant without remission provided through Fred Hutchinson Cancer Research Center, would save her life. A year ago, I had wondered countless times what the Lord was up to.

As I sat across the conference room table from Dr. Carpenter, in a small room looking out over Lake Union, I could not have imagined this day would ever come.

“It doesn’t get better than this,” he said. Oh how I cherish and savor those words and run them over my mouth and mind over and over, in shocked, joyous exaltation. “It doesn’t get better than this.” On Monday, June 2^nd, Allistaire had 11 vials of blood drawn for a phenomenally long list of tests. In the following three days she had an echocardiogram, an EKG, a bone marrow aspirate, a skin biopsy, a CT and saw the cardiologist, the physical therapist, dentist, ophthalmologist, nutritionist and the oncologist. Every single test, everyone, was good. The flow cytometry test showed zero percent detectable leukemia, or as the pathology report reads:

Interpretation

Bone marrow, aspirate: No abnormal myeloid blast or monocytic population identified (see comment).

Comment

There is no immunophenotypic evidence of residual acute myeloid leukemia by flow cytometry.

Clinical

4 year-old female with history of AML.

Immunophenotyping by flow cytometry after lysis of the erythroid cells reveals that the white blood cells consists of .34% blasts (CD34+), 77.4% maturing neutrophilic forms, 5.4% monocytes and 13.1% lymphocytes.

This is how the Lord shouts His good gift to me, in these strange, wondrous words that delve the marrow of my child.

The cytogenetics/FISH report says this:

Result Summary: Normal female karyotype; No evidence of MLL rearrangement by FISH

Interpretation: These results are consistent with post-transplant disease remission.

The chimerism test showed 100% donor cells!

Her heart is functioning normally and is not dilated. Her kidney function is normal. Her liver function is normal. Her strength and flexibility are normal. There is no evidence of Graft Versus Host Disease (GVHD) in her skin, mouth, eyes or anywhere!

Her lungs show marked, significant improvement since being on steroids for the last 3 weeks for her Cryptogenic Organizing Pneumonia.

Even her immune system, her “immune reconstitution,” as they call it, is doing amazingly well! Dr. Carpenter said that he was impressed at how well her various cell types are doing. A number of her white blood cell types are at totally normal levels. Others are better than the average person one year post transplant – even despite 7 months of chemo after transplant. I cannot tell you the phenomenal number of details they looked at in assessing Allistaire but the sum statement is:

“It doesn’t get better than this.”

Yes, there are down sides. Most specifically, the targeted Busulfan, one of the chemotherapies that was part of the conditioning for transplant (as in the napalm of chemo), has most likely had a very toxic effect on her ovaries. This means that we should expect that she is infertile and additionally, because her ovaries may not be able to produce hormones as they would were they healthy, she may have delayed puberty and need hormone replacement. On the other hand, this particular clinical trial transplant did not include TBI (Total Body Irradiation) as the originally planned/standard transplant would have. What this means is that her body was essentially saved from a nuclear blast and that her pituitary gland and thyroid have been left largely untouched. TBI would have opened the door to a whole host of awful “Late Effects” as they are called.

Dr. Carpenter is such a professional that the meeting was fairly low-key, but inside my mouth was gaping and my heart was racing around doing little giddy twirls. Thank You Father God! I could never have imagined such a day. Oh I hoped for it desperately, but in a way, for a long time, I didn’t even allow myself to look this far down the road. But here we are.

A few days ago I took Allistaire in for her first set of vaccinations. All those many rounds of shots from infancy were wiped clean gone along with her marrow during transplant. At this point she can begin getting all of her vaccinations with the exception of those that include live viruses, such as Measles, Mumps and Rubella. For these, she must wait for one year once she is off all immune suppressants (steroids). And as a little side note for those who have not or are considering not vaccinating your kids. There’s a lot to say on the subject, but one point to consider is that there are those like Allistaire who simply cannot be vaccinated. They are left exposed, without defense, to horrifying diseases that can cripple and kill if contracted. When every child that can be vaccinated is, it tremendously reduces the likelihood that a sweet girl like Allistaire who cannot be, will ever be exposed to these awful diseases.

As we drove into town to go get those dreaded shots and Allistaire’s eyes welled with terror and tears, I found myself attempting to explain to her why these shots were worth it and why she needed them. I told her about the strong medicine that killed the blood in her bones so that it would also kill the cancer that lives there. And then I began telling the tale of how a woman, my own age, on the other side of the planet loved her, even though she has never known Allistaire. How this woman was willing to endure the pain of shots so that her bone marrow would release those magical stem cells into her peripheral blood and how yet another needle pierced her skin, this time to collect those cells. An airplane crossed over the North Pole where Santa lives and landed in Seattle. Then a truck picked up the little white cooler that held the cells and eventually they arrived at Seattle Children’s and I found myself walking down the hallway behind that swift, purposed woman who carried the cooler, all the way to Allistaire’s room. I was crying as I told Allistaire these details and of the color of cells in that little bag and how they hooked the line to her tubies and the stem cells flowed in. I am still so humbled that this woman who doesn’t know us, would love us so tangibly. Perhaps she was able to imagine that there might be someone on the earth that would one day desperately need what she was able to give, and so she determined to join the bone marrow registry in her country. Thank God for imagination.

It is Friday the 13th. Quite a good day really. In five days it will have been one year since that joyous and simultaneously anti-climatic day that someone else’s blood began to flow into Allistaire. For one year, that European woman’s stem cells have made their home in Allistaire’s bones and have been doing one amazing job at producing red blood and platelets and white blood cells. Now those white blood cells will get a glimpse of diseases they have never seen (polio, hepatitis, pneumococcal and many others). And in all the miraculous wonders of our flesh, those white blood cells will fight and win and store the knowledge of their weaponry and victory, to stave off any future attacks of even greater force. I am ever in awe of all of it – all of it – the intricacies of our body and how it can actually keep us alive despite so much working against it, the generosity of those who have given bag after bag of red blood and platelets and the thousands it takes to make one bag of Immunoglobins, the woman who gave her stem cells, the myriad of doctors and professionals who tirelessly give of their time and brilliance, the phenomenal generosity of those who give to Seattle Children’s and Fred Hutch to make all this medicine and testing and care possible, the blue sky and wind and a sun that rises every day and flowers that somehow come back every spring, for millions of prayers uttered into the expanse – trusting that God will hear and care and answer as He chooses, for a God that looks down from on high and considers each of our hearts, all of our ways, who knows the number of hairs on our heads, and who interjects Himself in the most surprising of ways into our world.

I have SO much to be grateful for – SO much to give thanks for. So, we’re planting a tree. I bought a tree for $49 the other day at Cashman’s nursery – a Radiant Crabapple with gorgeous pink blossoms. We will sink its roots into the Montana earth and water it and protect it from predators (deer and moose) and delight in its beauty and its reminder of all that God has made possible in the past year. And we’re going camping. It’s supposed to rain, but we’re going. God has made way for my hair to smell like campfire and for us all to wake in a small space together, dampened by the moist night air and waking too early from sunlight and bird song. Gifts incalculable.

Thank You Father. It doesn’t get any better than this. I still could never have willingly chosen this path. I could not have imagined being able to walk through such dark valleys or the joy of rising to such peaks, but God has been faithful to His word – to provide abundantly, to meet me in the darkness, to turn darkness into light and to redeem brokenness. Yet I ask for more, more God. I will keep hoping for what I do not yet see. Father, help me to walk in faith by your side. You have been SO good to me, and I am expectant.

To read all about Allistaire’s transplant last year on June 18, 2013 and see far more pictures of a year ago than I’ve added below, click HERE.

Thank you to all who have already generously donated to Fred Hutchinson Cancer Research Center by supporting me in Obliteride for the 50-mile ride this August 2014. You have made it possible for me to reach the minimum fundraising goal! If you have not yet donated and it brings you delight to imagine how your money, spurred on by your compassionate love, might be used to bring about the end of cancer and the furtherance of wondrous life for people like Allistaire, please consider donating today! One-hundred percent of all money donated goes directly to Cancer Research at Fred Hutch! Amazing!