Otherness

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So you would think that I would have learned my lesson:  be careful what you ask the Lord for because you just don’t know how He might choose to answer it.  This is sort of along the lines of don’t tell God what you’re not going to do.  I said I never wanted to move to California – yep, four years in the Golden State.  I said I never wanted to be a Resident Director and for those four fine years in California, I did exactly that.  I said I would never date a younger guy again.  Then I met Sten; did I ever mention Sten was a sixth grader when I was a senior in highschool?  (scary, I know)  Well, this time I didn’t tell God that I wasn’t going to do something.  I asked God for something and am now reminded that He often chooses to answer our prayers, the petitions of our hearts, in ways we would not choose ourselves.  Perhaps this is one of the ways He shows His “otherness.”

Last Wednesday, while Sten was in the out-patient HemOnc clinic with Allistaire and meeting with one of our doctors, Urmilla Uparker, he casually mentioned that at least this round of chemo we could go home after the chemo was done.  Urmilla told him she didn’t think that was the case because Allistaire is under 2 years old.  HOLD UP!  What?!  No one had ever said anything to us about Allistaire’s age being a factor in terms of us having to stay in the hospital.  At the beginning of all of this we were told that we would have to stay in the hospital until Allistaire’s counts rose to 200 for only the first round.  On all other rounds, we could return home as soon as chemo was completed and only have to return if Allistaire got a fever.  After a number conversations with mixed information on the subject, our current attending doctor, Dr. Julie Park, spent some time with me Friday afternoon going over what the next three rounds of chemo will look like and about possible time frames.

In short, it is accurate that because Allistaire is not yet two, we will have to once again stay in the hospital until her ANC comes up from zero and returns to 200.  The last time this took 5 weeks from the first day of chemo until her ANC went over 200.  It is possible, I am told, that because her marrow is starting out at a healthier place this time and because this round of chemo is a little lighter than the last, her counts may recover a bit faster.  This means instead of staying 8 days like we thought, we will end up being here 4-5 weeks.  Assuming, we get to go home for a few days again, this puts the start of the 3rd round of chemo at about the middle of the first full week of March.  By this time, Allistaire will be two as her birthday is on March 6th.  The doctor said she will push for us being able to go home at the end of this 6-day round of chemo if Allistaire does amazing with this current round.  Of course if she gets a fever or has an infection, we will have to return to the hospital within and hour.  She will then be put on IV antibiotics and have to stay in the hospital until her ANC gets to 200. The reasoning is that because of Allistaire’s age, she is limited in her ability to communicate if there are issues going on for her.  We have to rely on external signs and things that can be tested.  Because her immune system is so suppressed by the chemotherapy as it kills cells, her body is unable to mount much of a response to illness and infection.  This means that only subtle signs may be visible even when there could be serious issues going on.  Staying in the hospital allows the doctors to monitor her on a very frequent basis.  More than likely, Allistaire would begin her fourth and final round of chemo around April 19th, assuming a total of 6 weeks from the start of the 3rd round and including a few days at home.  Apparently, on the last round everyone, regardless of age, must stay in the hospital until their counts recover.  This is due to the fact that this last/4th round of chemo is different from all other rounds in terms of the types of chemo and just as intense as the very first round.  As a result, Allistaire’s blood counts may take longer to come up at the end because of the severity of the last round of chemo and because of the cumulative effect of all the rounds on her marrow.  At the end of each round of chemo, Allistaire will have another bone marrow test just as she did the last time.

Once Allistaire is done with all of her chemotherapy, and assuming there is still no detectable cancer cells, thus not requiring a bone marrow transplant, her ANC must rise over 1,000 before she can have her Central Line removed.  After that, she will come into clinic several times a week for a few weeks just to make sure all is well.  Beyond this, I am told that she will need to have monthly doctor visits where her blood will be checked for the first few years.  She will not need another bone marrow test unless there is reason for concern based on her blood tests.

So, July.  Perhaps in July we will finally all four live under one roof again.  I cannot tell you how disappointing and daunting this feels.  Again, I know we have MUCH to rejoice in!  The fact that our journey with this illness could be done so soon is incredible.  If Allistaire were to need a transplant, our journey might not be done until over a year from now.  Nevertheless, I so had hoped we just had (8+6+6) = 20 more days guaranteed in the hospital.  I knew if Allistaire got a fever that could change things dramatically, but you hope for the best.

So this is the part where I get back to the way God seems to answer prayers in ways we would never choose.  While my brain had already put the pieces together on Thursday, it wasn’t until Friday evening that the reality of God’s seeming answer got fleshed out.  Friday night I was all excited about going to craft night at Rachel’s house with my sister-in-law Briana.  Oh yeah, an evening hanging out with women folk, crocheting and eating chocolate – maybe even drinking wine – sounds great to me!  About 15 minutes before I was about to head out, my friend calls on the hospital phone.  Her son was here when we first got here and on day 77 since his transplant.  She was such a blessing to me especially in those beginning scary days when everything was new.  She willingly helped me understand and learn about life here at SCCA.  Not only that, she walked laps around the Unit with me while Allistaire rode the bikes.  When it was time for them to leave the hospital, not for home, but for the Ronald McDonald House across the street, I was so sad that I would not have her in my daily life.  I would walk by their old rooms and there were new faces laying in the beds.  So on this night when she called and wanted to know if I was up for a visitor, I was bummed at the timing but said that it wouldn’t work because of craft night.  Then I asked about her son who she said is doing great.  What wasn’t great was some of what came out of their summary meeting – the one you have when you’re far enough out from your transplant that you can actually go home to your house and be an hour away from the hospital.  “They wouldn’t say that he was cured,” she began to cry.  She said she had become so accustomed to having to take one day at a time that when they said the cancer could still come back, even after the transplant, especially in the next 8 months, she felt utterly overwhelmed.  He got cancer when he was 8 months old.  For two years he fought it, for two years he was healthy.  Then it came back and he had more chemo then a transplant at the end of September 2011.  Because of the all the chemo he’s had and then the radiation that’s also a part of transplant, he is now at higher risk for other cancers, even if his original cancer doesn’t come back.  My dear friend is overwhelmed and rightly mourning the loss of innocence for her son who will never know a life apart from the real possibility of cancer.  I can be late for craft night I say.  I’ll be right over.  The Lord answers prayer.  Sometimes His answers don’t fit with what we have in mind or what is convenient for us.  I asked the Lord to open my eyes and give me ears to hear and to be sensitive to His Spirit.  I asked Him to allow me to love and to support and to rejoice with those who are rejoicing and to mourn with those who mourn.  Friday night, He gave me something better than craft night.  He answered my prayer.  He gave me an open door to love my sweet friend Stefanie.  I was able to be present with her and to mourn with her.  I feel very privileged to be have been able to do so.  These next four months I wanted to be mostly home.  These folks here in the hospital are here, they are not in my house.  It seems the Lord has made a way for me to be here in this place longer.  What seemed to have been cut short, only seemed that way.  God has lengthened my road and I thank Him for it.  It is once again, not what I would have chosen, but it is what has been given.  Thank you Father that your ways are not our ways but your ways are higher than the heavens.

Tonight Allistaire is receiving her fourth night of chemo – by tomorrow morning she’ll be half-way done.  She continues to do great, though she is definitely tired and sleeping late into the morning and taking long naps.  Apparently she had enough energy to chase Piper  around the Unit this morning and I did hear something about my dad actually running around the Unit, pulling Allistaire in the red wagon while chasing Piper who was riding a bike.  Good times, great people!  Speaking of, Sten and I had a great time hanging out with my brother Patrick, our sister-in-law, Briana, and our little niece Lucy who will be 3 a few days after Allistaire turns 2 and little man Elijah who is just 3 months old.  Here’s a little peak from our visit tonight:

 

3 responses »

  1. Jai to Lucy: “Do you think you’re maybe like 39?’ hahahaahah.
    and, I love your perspective on the augmented time at the hospital & I’m so thankful you went late to craft night:
    “I asked Him to allow me to love and to support and to rejoice with those who are rejoicing and to mourn with those who mourn. Friday night, He gave me something better than craft night. He answered my prayer. He gave me an open door to love my sweet friend Stefanie. I was able to be present with her and to mourn with her. I feel very privileged to be have been able to do so. These next four months I wanted to be mostly home. These folks here in the hospital are here, they are not in my house. It seems the Lord has made a way for me to be here in this place longer. What seemed to have been cut short, only seemed that way. God has lengthened my road and I thank Him for it. It is once again, not what I would have chosen, but it is what has been given. Thank you Father that your ways are not our ways but your ways are higher than the heavens.”

    Praise the LORD

  2. So true that Hs ways are not ours! I will be praying that you have strength… Both for the tedious and long hospital stay and that he would strengthen you as you encourage and strengthen those around you. God will continue to bless you for having the eyes to see what He is doing around you and through you!

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