We are finally in the last phase before maintenance!
Maintenance lasts for about two years, but is supposed to be less intense and
easier than the different phases of the first year. So right now, maintenance is the “new
beginning” that we are looking forward to, which is in 18 days!!! Hopefully we
won’t be too disappointed with how maintenance plays out.
We have had a few periods of Elliot’s counts being high
enough to get out the last few weeks, so we have tried to take advantage of
these opportunities.
We finished up Interim Maintenance II and only had a one
week delay because of his low counts before starting Delayed Intensification
II. The beginning of this phase started with 7 days of steroids, 7 days off and
then another 7 days of steroids. The first round wasn’t too bad, but the second
round of steroids was tough. He was miserable—restless, irritable, hungry and
sleepless. Then it takes about 4-7 days before the effects of the steroids wear
off. We are so thankful to have that part complete! We just started the second
half of this phase last Tuesday (3/17) with an all day hospital stay for chemo
after getting a lumbar puncture (LP) and chemo in the office. The tough part
about the second half of this phase is that he gets two 4 day rounds of Ara-c
(another type of chemo). They give it to him IV in the hospital/office, but
then we have to give it as a shot at home (for 3 days following the IV dose in
the office). The first few times he cried when he saw the needle coming, but got
more used to it….handles it pretty well. These (along with the other chemo
drugs) make his counts drop really low, so the next few weeks will be busy and tough.
Then this past Tuesday, in the office he had an LP, spinal
chemo, and the Ara-c (IV chemo). His counts were already dropping from the
chemo this past week, so his doctor wanted to give him platelets before the LP.
We got a little scare when he had a reaction to the platelets about ¾ of the
way through the bag—broke out into hives all over and his lips started swelling
(in spite of getting benadryl before the transfusion). They stopped the platelet
infusion, gave him more benadryl, solumedrol (steroid), and zantac. We are
thankful we were able to still get everything done (LP and two types of chemo).
They kept us there for a while to make sure the reaction cleared up before we
went home, so other than a scare and a delay, everything is still on track.
Once again, a big thank you to all our friends, family, church,
and prayer warriors. We feel so blessed!
"This world is our home: we are made to live here. It has been devastated by sin, but God plans to put it right...we can love this world because it is God's, and it will be healed becoming at last what God intended from the beginning."
–quote
from Paul Marshall in Randy Alcorn’s book, Heaven, pg 85
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| One of his favorite things to do, especially during this phase when he doesn't feel very well, is ride his 4 wheeler. |
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| Feeding bird on trip to Riverbanks Zoo, one of our outings we took to take advantage of his counts being up |
