Wait and See

Standard

IMG_2792Strange 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.IMG_2791 IMG_2790

5 responses »

  1. Thank you for the update, a way to help, and your honesty. We continue to pray for wisdom for the doctors and for you and Allistaire. What an incredibly hard journey. I am grateful that you are not alone and you are able and willing to sit in the presence of the Lord. May He bring you hope and continue to give you all options.

  2. Heart failure. I can’t fathom this. Not even for a second. I’m just so sorry for this hurdle and the longevity of Seattle’s timeline. More time apart. More time alone. More days Alliataire doesn’t get to run about and play, especially with her sister. Hugs to you all. Know we think of you more than just the days we respond to your blog. xx

  3. You, your family, your sweet beautiful Allistaire… Nothing less then amazing! I’ve told you over and again though must still; you inspire those who need it most! Allistaire is in our prayers constantly Jai.

  4. Dearest friend,
    Thank you for your continued updates and posts. You are never far from our thoughts and remain forefront in our daily prayers. What Allistar has endured will change the way this horrible disease is treated for future children. She is a miracle and you a blessing of such beautiful grace. Sending love always, Heidi

  5. Waiting with you…and praying …and seeking to trust our loving and all-wise God with His plans and purposes for each of you as He waits with you, as well. May you sense His presence and compassion and power as you seek His strength to be what is needed for this day. Jim and Dayle

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