Again today, probably for the third time, I was told by a different nurse-practitioner how surprising it is that Allistaire did not get admitted last Saturday for her diarrhea. Again it was reiterated how fast and how seriously sick AML kids can get when they do get sick. I am very thankful that we have been able to stay home thus far. While we are nearing the end of this round, there are still some big challenges. What appears to be one bad zit on Allistaire’s bottom could be evidence of staph infection. I’ve been given a strong anti-bacterial cream to apply with each diaper change. Allistaire will have to go back in to be seen on Sunday if it has not improved by then. Also, while Allistaire’s stools are firming up a bit and have been far less frequent, she still has a cough and a bit of a runny nose. Thankfully she continues to sound great and her ears seem to have improved, but as long as she has symptoms, she must remain in isolation. Isolation is not too big of a deal at this point. It just means we wait for appointments in a different set of chairs, we are seen in select rooms and all the staff have to mask and gown up. The problem will be if she has not gotten over this by the time we go in-patient. If she is in isolation at that point, she cannot leave her room without being escorted by a nurse, nor will I be able to use the kitchenette. Allistaire shut up in her tiny room all day for a month would be miserable for both of us. Please pray that with her rising ANC (48 today) her body will be able to fight off this cold quick and be symptom free.
I come to the issue of greatest concern. Allistaire had her fourth echocardiogram today. Dahlia called this afternoon to say that there has been a significant change since her last echo was done. In the simplest terms, the echocardiogram measures the hearts ability to squeeze – as in how strong is it or how well is it able to pump blood. There are a number of different factors. The two that they look at are the Ejection Fraction which has dropped from 60% to 45% and most importantly, the Shortening Fraction, which has dropped from 41% to 31%. Because she is still recovering her blood counts and she is technically still anemic (her hematocrit is 29 today) we will wait until her counts recover more to do the test again. Presumably, once she has produced the appropriate amount of red blood, her heart should not have to work so hard to pump blood. There are really a number of concerning factors. There is the obvious concern that there has been damage done to her heart. In the immediate context, this could impact Allistaire’s ability to get the chemo she needs for this fourth round. Mitoxantrone, known famously as “Blue Thunder,” is the main chemo of round 4 and is said to be the most powerful of all the chemo drugs Allistaire is supposed to get throughout her treatment. If her Shortening Fraction were to fall below 27%, they would not allow her to get the Mitoxantrone for fear of severe cardiac consequences which are especially possible with this particular type of chemo. As you can imagine, the prospect of heart damage and/or the prospect of her not being able to get one of the most important chemos to fight AML is awful. I beseech you for your prayers about this. The one possible bit of hopeful info with this is that when I asked for her baseline numbers from the echocardiogram that they did prior to treatment (on Dec. 10th), her Shortening Fraction then was 32%. On her second echo on January 16th, it was 31%. Today it was 31%. Only on on the echo after round 2 on February 16th was it 41%. All of this to say, that as Dahlia looked up these past numbers, she suggested that perhaps that this was good news and that Allistaire’s norm is around 31%. I am hopeful that this is the case. She will be discussing this with Dr. Pollard and the cardiologist.
Lastly, while Allistaire’s bone marrow test is still currently scheduled for next Tuesday, I learned today that her ANC must be 500 this time for them to do the test. I’m not sure why the higher numbers but this just means that while we will still go in for labs and clinic on Tuesday, if her ANC is not high enough, the test will be pushed back until Thursday or Friday. We also went ahead and decided to push back her admit date until Monday or Tuesday, April 2nd or 3rd just so that she can have a few more days to raise her blood counts, get over this cold and for us to have the weekend together. If her counts are simply soaring, it is possible to have the bone marrow test on Tuesday, clinic on Friday and an admit on Sunday. They just have to wait to get back results from the bone marrow test before admitting and she must be seen within 72 hours prior to being admitted.
Friends, I cannot tell you how much your prayers have meant to me. I am constantly astonished that Allistaire continues to be fever free. I’ve been amping myself up for the big last round but now I feel added stress due to Allistaire being sick and the possible issues with her heart. Please pray that God would continue to sustain her wee precious flesh. As has been the case, Allistaire simply gets cuter and cuter, more and more hilarious and more and more dear to us. I cannot tell you how many times in the past two weeks Sten and I have just looked at each other in wonderment at what a little character she is. Now that she is talking so much more she just holds tighter to our hearts. I love my little girl more than I can say and I desperately want her well and without permanent damage.
I leave you with these words from the results of Allstaire’s last bone marrow test (I just requested these printouts today), as a testament to what the Lord as already done, showing his kindness and provision in our lives:
From the Flow Cytometry Test:
“Bone marrow, aspirate: No abnormal myeloid blast populations identified. There is no immunophenotypic evidence of residual acute myeloid leukemia by flow cytometry.”
From the Bone Marrow Microscope Finding:
“Diagnosis: Right Bone Marrow Aspirate and Biopsy: Acute Myeloid Leukemia in morphologic remission”
We continue to pray. Thank you for your updates. We are praying for her sweet heart.
Oh Jai- We’ve had many a runny diaper, many lathering up sessions “down there” and oh so many (more than usual for us) trips to the doctor this season. The two baby boys both have secondary infections from a respiratory virus and have been sick for the last month. I’ve been thankful for the regular reminders to pray for Allistaire as I change them and nebulize them and comfort them. It’s “just” a couple of ear infections and a possible pneumonia and yet I’ve taken up your thankfulness for being one more night at home, one more day without a doctor appointment. As I care for my babies in these little ways, I am so happy to be praying for you caring for yours.
Tears… For what is and what God has done. I am fervently praying for your sweet little one. Lord, I ask you to place Your healing hand once again on Allistaire. God, how can I even pray for healing without pouring out thankfulness for what You have already done? You are good Lord and we are so grateful that You have worked such a wondrous healing in this sweet, life-filled little girl. God, I ask that you would take away her cough and runny nose. That she would not have to be in isolation when she is re-admitted. I pray you would heal her bum and the zit she has there. God, I pray this would not be staph, but that it would disappear and be no more. Lord, I pray her ANC number would rise so that she could have her bone marrow test done. I pray for the results from this test, Lord. That they would, yet again, show no cancer in her little body. Father, I pray for her sweet little heart. Strengthen it Lord. Restore it. Help her body to be strong. To sustain and fight while it receives these medicines. Thank-you God for medicine to heal her! God, thank-you for this sweet child and the blessing she is to everyone around her. Lord, strengthen Sten and Jai. God may they both know Your loving hands around them in an undeniable way. Give them peace. Give them open hands and trusting hearts. Bless them Lord. Bless their family, their marriage. Continue to guide and direct them. God, Giver of life, You are good and we love You. Thank-you for hearing us and loving us.
I think about you guys all the time and as I watch my sweet Emmy grow, now 16 months. I can so relate to how you grow to love them more every day. As they discover more and their little personalities come out, you can’t imagine loving them more. Praying for your sweet baby.