Today Zev had his weekly checkup at OHSU. The blood draw was as smooth as those go. The counts were good too: white blood cells only a little above normal and platelets, while far below healthy, are not at transfusion levels either.
Zev is feeling well, playful and energetic. In the last two days he has even asked for food and has been eating well, thank G-D. We continue to fret and keep him isolated to even greater degree than the docs suggest, but this does by a measure of comfort that he will enter transplant prep as bug-free as possible.
Speaking of that: no news is good news. The check-in is till Monday the 4th and transplant, Day 0, is scheduled for the 15th.
In the mean time Benjamin and I have been allowed back home. It is good to have the boys together; they have been asking about each other. It should also be noted that they are substantially easier to control when apart. Benjamin, especially, gets jealous of Zev's time with Alla and acts out. I can usually maintain order, but not without a credible threat of time out. Our attempts at non-authoritarian order meet with varying success.
Tuesday, July 29, 2014
Tuesday, July 22, 2014
Donor 1 confirmed good, bloodwork stable
Today donor 1 (the original first choice) confirmed. The detailed schedule should become clear by the end of the week and it will hinge, to some degree, on the availability of the surgical team to put the central line in. To have the donor confirmed is a relief. Now they have to watch themselves for the next several weeks.
Today Zev also had a weekly checkup. The numbers look good - white blood cells elevated some, but not bad and platelets nowhere near the transfusion range. So - we continue with 6MP.
Both Benjamin and I are temporarily banished from the house for sniffles and a sore throat, respectively. Vika, Michael, and Rafi have kindly put us up for a few days. Should nothing change, we will consider moving back in a day or two.
Today Zev also had a weekly checkup. The numbers look good - white blood cells elevated some, but not bad and platelets nowhere near the transfusion range. So - we continue with 6MP.
Both Benjamin and I are temporarily banished from the house for sniffles and a sore throat, respectively. Vika, Michael, and Rafi have kindly put us up for a few days. Should nothing change, we will consider moving back in a day or two.
Sunday, July 20, 2014
Transplant delay; another day at the beach
Late on Friday afternoon the transplant coordinator called us to inform that the donor we were going to go with has become unavailable. Precisely, she said "the donor is no longer in Zev's best interest." I can only assume the last minute blood work has shown something. We are now back to the original donor. The new planned check-in date is August 4th and the transplant date is August 15th. Also, the nose swab showed no major viruses, so we are clear there.
Yesterday we have made another trip to the ocean. The weather at Cannon Beach cooperated.
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| Benjamin at the beach |
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| with grandpa Michael |
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| Zevi testing the water |
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| I think he likes it |
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| Being lectured on hydrodynamics |
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| Just carry it, grandpa! |
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| Zevi taking a walk with (later - ride on) dad to Haystack rock. |
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| Boys giving a brotherly jug to their buddy Mark. Mark is wondering how long do those usually last. |
Thursday, July 17, 2014
A trip to the volcano
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| At the museum, learning about volcanos 6/30/14 |
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| Zevi and grandpa Tolya survey the hike, at the top of the caldera |
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| Benya enjoys the ride. Dad - not so much. |
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| Zeva the wolf |
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| Benya looks on at the lava field |
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| A tree growing out of the lava field |
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| Not your typical view |
Another trip to OHSU, preparations continue
Today Zevi had a surgical consult that went well. Also he got to play with a nice lady and a doll that got a central line put in it. A central line in a semi-permanent line that goes into a verin and into the heart, comes out of the chest and ends up split into the separate connectors. It requires care and represents an infection risk, but does allow for infusions and blood draws without going into the veins. Over all, a very standard procedure that will eliminate the need for poking. Finally, Zevi got his nose swabbed to assess the bug he has. We will find out the results of the swab Monday and will make the go/no go decision then.
The day before Zevi had an interesting conversation with my dad. Zevi was given an ice cream, which he ate about a quarter of before it starting melting. Foreseeing ice cream on the floor, couch and every other surface, my father confiscated it and placed it in the freezer. My dad, then, used the opportunity to launch into a brief lecture on liquid vs. solid phases of ice cream. Zevi was told that once the ice cream is solid he can have it back. Zevi replied:
"I have understood. It is a good idea." He then pointed to another ice cream in the freezer: "This one is solid."
My father had no choice but to agree with the logic and provide a fresh ice cream. Which was then eaten a quarter way before it became liquid, was placed into the freezer and replaced with ice cream number three.
The day before Zevi had an interesting conversation with my dad. Zevi was given an ice cream, which he ate about a quarter of before it starting melting. Foreseeing ice cream on the floor, couch and every other surface, my father confiscated it and placed it in the freezer. My dad, then, used the opportunity to launch into a brief lecture on liquid vs. solid phases of ice cream. Zevi was told that once the ice cream is solid he can have it back. Zevi replied:
"I have understood. It is a good idea." He then pointed to another ice cream in the freezer: "This one is solid."
My father had no choice but to agree with the logic and provide a fresh ice cream. Which was then eaten a quarter way before it became liquid, was placed into the freezer and replaced with ice cream number three.
Monday, July 14, 2014
a long appointment, a long day
It was a long, tough day. For once, Zevi's part was relatively easy: he got his blood drawn (went very well), got briefly examined, declared in very good health all considering, and was sent home with grandma Rita.
Alla, my dad, and I remained at the hospital for a long, hard conversation. We discussed the chemo regimen, the likely and the less likely side effects, the transplant process, life at the hospital before and after transplant, some of the details of life at home after transplant. The details (which we read before the appointment) included the mandatory fine print of side effects "rare and dangerous". We also spent a long time discussing the Graft Versus Host Disease (GVHD). Right after we went over all the details, we got it repeated to us that the alternative is worse and signed the consent form.
Besides the doctor and the transplant coordinator we spoke with two social worker type folks who help with emotional support for us and some activities for Zevi. By that point, frankly, we were largely numb.
The good thing in the appointment was Zevi's condition: white blood cells down a bit, weight stable, platelets not low enough to need transfusions, they even let us skip the antibiotic this week. All of these things are slight improvements to Zev's chances, so we will take them.
Later today we also visited Doctor Kirill of Adroit Dental (www.adroitdental.com) for the mandatory oral checkup. The appointment was lightning fast and accompanied by not a pip out of Zevi who was declared oral infection free. To boot, Zevi got a few toys and walked away happy and clutching the loot to his chest.
Next: surgical consult on Thursday. Also on Thursday Zevi will get his nose swabbed to see what sort of bug could be hiding in his long-lasting runny nose. On Monday we receive both the swab results and, hopefully, final confirmation from the donor. If both are "go", then Tuesday we check in and Zevi gets his central line put in (more on that later).
Alla, my dad, and I remained at the hospital for a long, hard conversation. We discussed the chemo regimen, the likely and the less likely side effects, the transplant process, life at the hospital before and after transplant, some of the details of life at home after transplant. The details (which we read before the appointment) included the mandatory fine print of side effects "rare and dangerous". We also spent a long time discussing the Graft Versus Host Disease (GVHD). Right after we went over all the details, we got it repeated to us that the alternative is worse and signed the consent form.
Besides the doctor and the transplant coordinator we spoke with two social worker type folks who help with emotional support for us and some activities for Zevi. By that point, frankly, we were largely numb.
The good thing in the appointment was Zevi's condition: white blood cells down a bit, weight stable, platelets not low enough to need transfusions, they even let us skip the antibiotic this week. All of these things are slight improvements to Zev's chances, so we will take them.
Later today we also visited Doctor Kirill of Adroit Dental (www.adroitdental.com) for the mandatory oral checkup. The appointment was lightning fast and accompanied by not a pip out of Zevi who was declared oral infection free. To boot, Zevi got a few toys and walked away happy and clutching the loot to his chest.
Next: surgical consult on Thursday. Also on Thursday Zevi will get his nose swabbed to see what sort of bug could be hiding in his long-lasting runny nose. On Monday we receive both the swab results and, hopefully, final confirmation from the donor. If both are "go", then Tuesday we check in and Zevi gets his central line put in (more on that later).
Friday, July 11, 2014
feeling better and back to poop
In the last couple of days Zevi has been feeling better as 6MP does it's job. He still puts up somewhat of a fight about taking the anti-nausea medicine, but that is minor. He eats more and is in better spirits.
Next week will be appointment-heavy, as Zevi prepares for his July 22nd check-in: blood draw, check-up, a visit with a dentist (see you soon, unlce Kirill) and a surgeon. Alla and I will get to read all about the mechanics of the transplant, about the side effects, and then sign the concession form. Alla has done the reading while I have been a bum about it. Can't wait.
It comes to my attention that it has been a long time since I have written about poop here. Blood - check. Vomit - check (a little). Poop a urine - not recently. So, here goes... The boys have shown some interest in using the potty. Benya actually peed and nominally pooped in one, for which he was praised and rewarded with a toy (red Porsche 322, for the detail-oriented). Zeva did not actually produce, though he did try enthusiastically. His reward was a blue Mastretta MXT (Mexico's first supercar). The night after for no good reason at all each talked his way into a stylishly gray Lamborghini Sesto Elemento.
The night after that I was out of supercars, so that's enough for a while.
Next week will be appointment-heavy, as Zevi prepares for his July 22nd check-in: blood draw, check-up, a visit with a dentist (see you soon, unlce Kirill) and a surgeon. Alla and I will get to read all about the mechanics of the transplant, about the side effects, and then sign the concession form. Alla has done the reading while I have been a bum about it. Can't wait.
It comes to my attention that it has been a long time since I have written about poop here. Blood - check. Vomit - check (a little). Poop a urine - not recently. So, here goes... The boys have shown some interest in using the potty. Benya actually peed and nominally pooped in one, for which he was praised and rewarded with a toy (red Porsche 322, for the detail-oriented). Zeva did not actually produce, though he did try enthusiastically. His reward was a blue Mastretta MXT (Mexico's first supercar). The night after for no good reason at all each talked his way into a stylishly gray Lamborghini Sesto Elemento.
The night after that I was out of supercars, so that's enough for a while.
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| Zeva at the park, 7/9/14 |
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| A lot more Zeva at the park, same day |
Monday, July 7, 2014
today's update
Over the last two three days, as expected without 6MP, Zev's platelets went up, as did the white blood cells. This resulted in the usual effects - feeling weaker, loss of appetite, progressively poor sleep. Last night was pretty rough, especially on Alla - Zeva refused to sleep even next to her. We have been managing by a staggered blend of Ibuprofen and Tylenol.
Today Zeva had another check-up. Platelets at 105k (far from dangerous, far from healthy), white blood cells at 30k (2.5-3 times normal). Restarting 6MP at a slightly smaller dose.
Another scheduling change. Donor 2 is now the primary candidate, with the tentative admission date back to July 22nd and tentative transplant date of August 1st.
In other news...
Over the 4th we spent an entire week with the family at Sunriver, OR. The boys swam in the pool, played in an awesome sand box, walked atop a volcano and rode in strollers through a resulting lava field. They also saw various snakes and frogs in a couple of local museums. They got to sit in a police car and watch a fire truck up close on the 4th of July parade.
Also, we cut Zevi's hair. Short. Here is a pic from last night.
Today Zeva had another check-up. Platelets at 105k (far from dangerous, far from healthy), white blood cells at 30k (2.5-3 times normal). Restarting 6MP at a slightly smaller dose.
Another scheduling change. Donor 2 is now the primary candidate, with the tentative admission date back to July 22nd and tentative transplant date of August 1st.
In other news...
Over the 4th we spent an entire week with the family at Sunriver, OR. The boys swam in the pool, played in an awesome sand box, walked atop a volcano and rode in strollers through a resulting lava field. They also saw various snakes and frogs in a couple of local museums. They got to sit in a police car and watch a fire truck up close on the 4th of July parade.
Also, we cut Zevi's hair. Short. Here is a pic from last night.
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| That's right, that's *two* ice creams, people! |
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